[TMIC] TM support group
Hi Sandy, Just wanted to bring you up to date of the New Jersey Support Group. We had our 7th meeting on October 6th and as always we had a great turnout. We ended up with almost 30 people 12 of whom have TM. As always we had some new members coming for the first time and as always all of them had never before met anyone with TM. It is great to let them know we are not alone. We also had a guest speaker, Doctor Neil Holland who also happens to be my neurologist. Dr. Holland was responsible for me taking the trial to see if the Baclofin Pump would be beneficial for me. After taking the trial there was no doubt in my mind that the pump could greatly improve the quality of my life. I have now had the pump since the end of June and after a couple of months of tweaking with the dosage and the time of the dosages, i think I finally have it right. With my present dosage I will require a refill approx. every 4 months...no big deal. Doctor Holland believes that the pump is totally being underutilized for both MS and TM patients. My advice is anyone who suffers from banding and spasticity have nothing to lose taking the trial.The trial takes about 3 hours and consists of injecting a small dose of baclofin directly into the spine.In less than an hour it will be obvious if the pump will work for you! Please keep in mind that taking Baclofin orally did not work for me...it gave me headaches and nausea. However the dose being administered (directly to the spine) is so much smaller that I have not suffered any of these side effects. I wrote a journal and posted to this site as well as the 3 sites on facebook so others considering this medical option would understand what I went thru. For additional information on the pump you can go the the manufacturer Medtronics and learn more regarding the pump and the procedure. All the best! Rob in New Jersey Robert Pall 4 Victoria Court Morganville NJ 07751
[TMIC] TM experience
Thanks, Jude, for the idea to hear stories about TM experiences. They do vary yet have areas in common. In 2004 I was working around my house remodeling our kitchen in the morning before my 2nd shift custodial job at a school. I had been on a ladder and thought the numbness in my left leg was due to climbing up and down. At work, though, I had some awful pains in my neck and began getting weaker and weaker. I decided to come home early just to lie down. Since I was rarely sick or missed work my wife knew something was wrong and was convinced I needed to go to the emergency room. I maybe shouldn't have, but I insisted on coming home to take a shower. After getting to the hospital I got terrible banding and then came the horrible spasms. Of course, I stayed in the hospital and had test after test and finally two days later came the diagnosis of TM. I believe the lesion was at C-3. The only prescription drug I take due to the TM is Valium when I have spasms. After I got out of the hospital we began a study of what vitamins to take to keep me going despite the fatigue. I was off work a couple of weeks but a month sooner than the doctor predicted. It is not easy getting through the day working, keeping up a house, helping my elderly parents but I am making it, so feel I am fortunate, especially as I read some of the stories of others with TM. I saw a neurologist for a while and was getting routine MRIs but there has been no change so only see my regular doctor every six months. My balance is not the greatest due to the spacisity in my legs, have to deal with other issues as far as bowels and bladder being slow. As I get older, I sense a little bit of increase in the symptoms, but hope to keep working for a while.
Re: [TMIC] TM Walk-Run-Roll Events
Debbie, How about the people on the list from the UK. A support group here would be good. How many people are from the UK in this group interested?? Nikki. Sent from my iPad On 26 Mar 2013, at 16:51, Deborah Nord Capen dnca...@gmail.com wrote: I hope that people on this list are reading about and keeping informed of the fundraisers about the U.S. Several very energetic members are putting a lot of effort and energy into the events and I hope they are not going unrewarded. If you are able to attend any of the events, please do so. If you are able to help out in any way with your expertise, I know it would be much appreciated. So far, the events are happening in Pennsylvania, South New Jersey, Georgia (YAY Kim!!!), Maryland and Florida. We would love to make it TEN Cities throughout the U.S., but five is still awesome. This is also a great way of starting a support group in your area, getting out and meeting others with TM in your area, getting out and walking (or rolling), and getting some fresh air and sunshine. If you have any questions, please check out the website at www.myelitis.org. Debbie dnca...@gmail.com P BE GREEN! Please consider the environment before printing this e-mail
[TMIC] tm umbra
igot both the day i entered the hosp. 4/1/2004 was paralized from the waist down for a week after that started theropy spent a month in the hosp. 2006 was paralized again spent a month in health south as a in patient got up and using a cane thats where i am now
Re: [TMIC] tm umbra
I know there are a very few of us that will get hit with TM twice – really sorry about that, but look what a fighter you are!! You need to be proud of what you have accomplished.I use a cane and was paralyzed from the shoulder blades down. Love my cane!! Your subject was “tm and umbra”.What is the “umbra”? Janice From: bob Sent: Saturday, January 26, 2013 2:39 PM To: tmic Subject: [TMIC] tm umbra igot both the day i entered the hosp. 4/1/2004 was paralized from the waist down for a week after that started theropy spent a month in the hosp. 2006 was paralized again spent a month in health south as a in patient got up and using a cane thats where i am now
Re: [TMIC] tm and the lungs
I remember from my 10th grade science classes this movement along some of the smooth muscles called peristalsis or peristaltic movement. It is what moves our food through the gut after exiting down the stomach. But it also controls the peristaltic or wave movement of the cilia linings of the lungs, which are little hair like things that slowly move any foreign things out of the lungs, where they can be coughed out. If these cilia become inactive due to their nerves not responding, then there could indeed be trouble with infections, since the lungs have no capability to defend themselves against infection. T.M. could affect these nerves even while allowing the diaphragm to be working mostly OK. What about it? Dalton From: Cody c...@austin.rr.com Date: Thursday, 30 January 2012 10:02 PM To: Janice Nichols jan...@centurytel.net, john snodgrass jcs...@yahoo.com Cc: transverse myelitis tmic-list@eskimo.com Subject: Re: [TMIC] tm and the lungs Resent-From: tmic-list@eskimo.com Resent-Date: Thu, 30 Aug 2012 19:02:31 -0700 Thanks Janice. You know I have really enjoyed this machine. I get much better rest now. I thought I would hate it.Cody From: Janice Nichols mailto:jan...@centurytel.net Sent: Thursday, August 30, 2012 7:31 PM To: Cody mailto:c...@austin.rr.com ; john snodgrass mailto:jcs...@yahoo.com Cc: transverse myelitis mailto:tmic-list@eskimo.com Subject: Re: [TMIC] tm and the lungs In everything I have read on TM and the problems that go with it, I would say you are right when you say we are compromised with our immune systems. Hope you get to where you will not need the bipap machine for long. Janice From: Cody mailto:c...@austin.rr.com Sent: Thursday, August 30, 2012 1:36 PM To: john snodgrass mailto:jcs...@yahoo.com Cc: transverse myelitis mailto:tmic-list@eskimo.com Subject: Re: [TMIC] tm and the lungs I was in ICU last December for two weeks with I very serious lung infection that required antibiotics into my bloodstream with a pic line and with incubation and feeding tubes. The doctors told me they could not tell if the infection began in my lungs or my bladder. I now have to use a bipap machine when I sleep. Still don't know if it was related my TM but my guess is the TM has compromised my entire immune system. I had an entire regiment of specialist including pulmonologist, neurologist, internist, radiologist, gastroenterologist, and probably others that I forgot. Anyway I was a pretty sick guy but they got me fixed..Cody in Austin Sent from my iPad On Aug 30, 2012, at 9:57 AM, john snodgrass jcs...@yahoo.com wrote: makes sense. From: Mary Anne Egan mae...@thestettlergroup.com To: john snodgrass jcs...@yahoo.com Cc: transverse myelitis tmic-list@eskimo.com Sent: Wednesday, August 29, 2012 8:10 PM Subject: Re: [TMIC] tm and the lungs My daughter has lung issues second to tm but it is due to her level of loss which causes lung issues and weakness which results in her scarring etc Make sense? Mary Anne Egan Sent from my iPhone On Aug 29, 2012, at 6:45 PM, john snodgrass mailto:jcs...@yahoo.com jcs...@yahoo.com wrote: i would wonder about it in that the nervous system can effect the lungs,,,like Jim,,,so perhaps the spasms or whatever happens to those that have the lung troubhle just may have scar tissue,,but i would think that it would be to those that are using a ventilator From: Janice Nichols mailto:jan...@centurytel.net jan...@centurytel.net To: jeff bernier mailto:jeffsmokeea...@yahoo.com jeffsmokeea...@yahoo.com; mailto:tmic-list@eskimo.com tmic-list@eskimo.com Sent: Wednesday, August 29, 2012 6:19 PM Subject: Re: [TMIC] tm and the lungs Have never heard of that before. Janice From: jeff bernier mailto:jeffsmokeea...@yahoo.com Sent: Wednesday, August 29, 2012 10:36 AM To: mailto:tmic-list@eskimo.com tmic-list@eskimo.com Subject: [TMIC] tm and the lungs ive been having a debate with another tmr on face book over this,she insist that tm can leave scar tissue and cause inflamation of the lungs,in all the research ive done over the last 13 years i have never heard of this,am i wrong?
Re: [TMIC] tm and the lungs
I think TM could cause, even inadvertently, all kinds of problems. Janice From: Dalton Garis Sent: Friday, August 31, 2012 6:33 AM To: Cody ; Janice Nichols ; john snodgrass Cc: transverse myelitis Subject: Re: [TMIC] tm and the lungs I remember from my 10th grade science classes this movement along some of the smooth muscles called peristalsis or peristaltic movement. It is what moves our food through the gut after exiting down the stomach. But it also controls the peristaltic or wave movement of the cilia linings of the lungs, which are little hair like things that slowly move any foreign things out of the lungs, where they can be coughed out. If these cilia become inactive due to their nerves not responding, then there could indeed be trouble with infections, since the lungs have no capability to defend themselves against infection. T.M. could affect these nerves even while allowing the diaphragm to be working mostly OK. What about it? Dalton From: Cody c...@austin.rr.com Date: Thursday, 30 January 2012 10:02 PM To: Janice Nichols jan...@centurytel.net, john snodgrass jcs...@yahoo.com Cc: transverse myelitis tmic-list@eskimo.com Subject: Re: [TMIC] tm and the lungs Resent-From: tmic-list@eskimo.com Resent-Date: Thu, 30 Aug 2012 19:02:31 -0700 Thanks Janice. You know I have really enjoyed this machine. I get much better rest now. I thought I would hate it.Cody From: Janice Nichols Sent: Thursday, August 30, 2012 7:31 PM To: Cody ; john snodgrass Cc: transverse myelitis Subject: Re: [TMIC] tm and the lungs In everything I have read on TM and the problems that go with it, I would say you are right when you say we are compromised with our immune systems.Hope you get to where you will not need the bipap machine for long. Janice From: Cody Sent: Thursday, August 30, 2012 1:36 PM To: john snodgrass Cc: transverse myelitis Subject: Re: [TMIC] tm and the lungs I was in ICU last December for two weeks with I very serious lung infection that required antibiotics into my bloodstream with a pic line and with incubation and feeding tubes. The doctors told me they could not tell if the infection began in my lungs or my bladder. I now have to use a bipap machine when I sleep. Still don't know if it was related my TM but my guess is the TM has compromised my entire immune system. I had an entire regiment of specialist including pulmonologist, neurologist, internist, radiologist, gastroenterologist, and probably others that I forgot. Anyway I was a pretty sick guy but they got me fixed..Cody in Austin Sent from my iPad On Aug 30, 2012, at 9:57 AM, john snodgrass jcs...@yahoo.com wrote: makes sense. -- From: Mary Anne Egan mae...@thestettlergroup.com To: john snodgrass jcs...@yahoo.com Cc: transverse myelitis tmic-list@eskimo.com Sent: Wednesday, August 29, 2012 8:10 PM Subject: Re: [TMIC] tm and the lungs My daughter has lung issues second to tm but it is due to her level of loss which causes lung issues and weakness which results in her scarring etc Make sense? Mary Anne Egan Sent from my iPhone On Aug 29, 2012, at 6:45 PM, john snodgrass jcs...@yahoo.com wrote: i would wonder about it in that the nervous system can effect the lungs,,,like Jim,,,so perhaps the spasms or whatever happens to those that have the lung troubhle just may have scar tissue,,but i would think that it would be to those that are using a ventilator From: Janice Nichols jan...@centurytel.net To: jeff bernier jeffsmokeea...@yahoo.com; tmic-list@eskimo.com Sent: Wednesday, August 29, 2012 6:19 PM Subject: Re: [TMIC] tm and the lungs Have never heard of that before. Janice From: jeff bernier Sent: Wednesday, August 29, 2012 10:36 AM To: tmic-list@eskimo.com Subject: [TMIC] tm and the lungs ive been having a debate with another tmr on face book over this,she insist that tm can leave scar tissue and cause inflamation of the lungs,in all the research ive done over the last 13 years i have never heard of this,am i wrong?
Re: [TMIC] tm and the lungs
makes sense. From: Mary Anne Egan mae...@thestettlergroup.com To: john snodgrass jcs...@yahoo.com Cc: transverse myelitis tmic-list@eskimo.com Sent: Wednesday, August 29, 2012 8:10 PM Subject: Re: [TMIC] tm and the lungs My daughter has lung issues second to tm but it is due to her level of loss which causes lung issues and weakness which results in her scarring etc Make sense? Mary Anne Egan Sent from my iPhone On Aug 29, 2012, at 6:45 PM, john snodgrass jcs...@yahoo.com wrote: i would wonder about it in that the nervous system can effect the lungs,,,like Jim,,,so perhaps the spasms or whatever happens to those that have the lung troubhle just may have scar tissue,,but i would think that it would be to those that are using a ventilator From: Janice Nichols jan...@centurytel.net To: jeff bernier jeffsmokeea...@yahoo.com; tmic-list@eskimo.com Sent: Wednesday, August 29, 2012 6:19 PM Subject: Re: [TMIC] tm and the lungs Have never heard of that before. Janice From: jeff bernier Sent: Wednesday, August 29, 2012 10:36 AM To: tmic-list@eskimo.com Subject: [TMIC] tm and the lungs ive been having a debate with another tmr on face book over this,she insist that tm can leave scar tissue and cause inflamation of the lungs,in all the research ive done over the last 13 years i have never heard of this,am i wrong?
Re: [TMIC] tm and the lungs
I was in ICU last December for two weeks with I very serious lung infection that required antibiotics into my bloodstream with a pic line and with incubation and feeding tubes. The doctors told me they could not tell if the infection began in my lungs or my bladder. I now have to use a bipap machine when I sleep. Still don't know if it was related my TM but my guess is the TM has compromised my entire immune system. I had an entire regiment of specialist including pulmonologist, neurologist, internist, radiologist, gastroenterologist, and probably others that I forgot. Anyway I was a pretty sick guy but they got me fixed..Cody in Austin Sent from my iPad On Aug 30, 2012, at 9:57 AM, john snodgrass jcs...@yahoo.com wrote: makes sense. From: Mary Anne Egan mae...@thestettlergroup.com To: john snodgrass jcs...@yahoo.com Cc: transverse myelitis tmic-list@eskimo.com Sent: Wednesday, August 29, 2012 8:10 PM Subject: Re: [TMIC] tm and the lungs My daughter has lung issues second to tm but it is due to her level of loss which causes lung issues and weakness which results in her scarring etc Make sense? Mary Anne Egan Sent from my iPhone On Aug 29, 2012, at 6:45 PM, john snodgrass jcs...@yahoo.com wrote: i would wonder about it in that the nervous system can effect the lungs,,,like Jim,,,so perhaps the spasms or whatever happens to those that have the lung troubhle just may have scar tissue,,but i would think that it would be to those that are using a ventilator From: Janice Nichols jan...@centurytel.net To: jeff bernier jeffsmokeea...@yahoo.com; tmic-list@eskimo.com Sent: Wednesday, August 29, 2012 6:19 PM Subject: Re: [TMIC] tm and the lungs Have never heard of that before. Janice From: jeff bernier Sent: Wednesday, August 29, 2012 10:36 AM To: tmic-list@eskimo.com Subject: [TMIC] tm and the lungs ive been having a debate with another tmr on face book over this,she insist that tm can leave scar tissue and cause inflamation of the lungs,in all the research ive done over the last 13 years i have never heard of this,am i wrong?
Re: [TMIC] tm and the lungs
i would suppose each individual case is just that,though we that have had TM suffer a lot of the same symptoms,each individual case will have associated problems in the body that TM may or may not have caused but definitely contributes to. It would be foolish for me to say no way to anything anyone suffers from,,unless of course I am suffering the same. when i worked with computer files i had a fit with association files. one file would tie its self to another and at first glance there would be no reasonable reason for it and if you delete one file that was associated with another ,the other may not work properly and thus render its root useless. the body works in much the same way yet individualizes much much more. my files may not associate the same way your files associate. thats a mouthful,,,dont try repeating itmay cause you to crash!,,lol From: Cody c...@austin.rr.com To: john snodgrass jcs...@yahoo.com Cc: transverse myelitis tmic-list@eskimo.com Sent: Thursday, August 30, 2012 2:36 PM Subject: Re: [TMIC] tm and the lungs I was in ICU last December for two weeks with I very serious lung infection that required antibiotics into my bloodstream with a pic line and with incubation and feeding tubes. The doctors told me they could not tell if the infection began in my lungs or my bladder. I now have to use a bipap machine when I sleep. Still don't know if it was related my TM but my guess is the TM has compromised my entire immune system. I had an entire regiment of specialist including pulmonologist, neurologist, internist, radiologist, gastroenterologist, and probably others that I forgot. Anyway I was a pretty sick guy but they got me fixed..Cody in Austin Sent from my iPad On Aug 30, 2012, at 9:57 AM, john snodgrass jcs...@yahoo.com wrote: makes sense. From: Mary Anne Egan mae...@thestettlergroup.com To: john snodgrass jcs...@yahoo.com Cc: transverse myelitis tmic-list@eskimo.com Sent: Wednesday, August 29, 2012 8:10 PM Subject: Re: [TMIC] tm and the lungs My daughter has lung issues second to tm but it is due to her level of loss which causes lung issues and weakness which results in her scarring etc Make sense? Mary Anne Egan Sent from my iPhone On Aug 29, 2012, at 6:45 PM, john snodgrass jcs...@yahoo.com wrote: i would wonder about it in that the nervous system can effect the lungs,,,like Jim,,,so perhaps the spasms or whatever happens to those that have the lung troubhle just may have scar tissue,,but i would think that it would be to those that are using a ventilator From: Janice Nichols jan...@centurytel.net To: jeff bernier jeffsmokeea...@yahoo.com; tmic-list@eskimo.com Sent: Wednesday, August 29, 2012 6:19 PM Subject: Re: [TMIC] tm and the lungs Have never heard of that before. Janice From: jeff bernier Sent: Wednesday, August 29, 2012 10:36 AM To: tmic-list@eskimo.com Subject: [TMIC] tm and the lungs ive been having a debate with another tmr on face book over this,she insist that tm can leave scar tissue and cause inflamation of the lungs,in all the research ive done over the last 13 years i have never heard of this,am i wrong?
Re: [TMIC] tm and the lungs
In everything I have read on TM and the problems that go with it, I would say you are right when you say we are compromised with our immune systems.Hope you get to where you will not need the bipap machine for long. Janice From: Cody Sent: Thursday, August 30, 2012 1:36 PM To: john snodgrass Cc: transverse myelitis Subject: Re: [TMIC] tm and the lungs I was in ICU last December for two weeks with I very serious lung infection that required antibiotics into my bloodstream with a pic line and with incubation and feeding tubes. The doctors told me they could not tell if the infection began in my lungs or my bladder. I now have to use a bipap machine when I sleep. Still don't know if it was related my TM but my guess is the TM has compromised my entire immune system. I had an entire regiment of specialist including pulmonologist, neurologist, internist, radiologist, gastroenterologist, and probably others that I forgot. Anyway I was a pretty sick guy but they got me fixed..Cody in Austin Sent from my iPad On Aug 30, 2012, at 9:57 AM, john snodgrass jcs...@yahoo.com wrote: makes sense. -- From: Mary Anne Egan mae...@thestettlergroup.com To: john snodgrass jcs...@yahoo.com Cc: transverse myelitis tmic-list@eskimo.com Sent: Wednesday, August 29, 2012 8:10 PM Subject: Re: [TMIC] tm and the lungs My daughter has lung issues second to tm but it is due to her level of loss which causes lung issues and weakness which results in her scarring etc Make sense? Mary Anne Egan Sent from my iPhone On Aug 29, 2012, at 6:45 PM, john snodgrass jcs...@yahoo.com wrote: i would wonder about it in that the nervous system can effect the lungs,,,like Jim,,,so perhaps the spasms or whatever happens to those that have the lung troubhle just may have scar tissue,,but i would think that it would be to those that are using a ventilator From: Janice Nichols jan...@centurytel.net To: jeff bernier jeffsmokeea...@yahoo.com; tmic-list@eskimo.com Sent: Wednesday, August 29, 2012 6:19 PM Subject: Re: [TMIC] tm and the lungs Have never heard of that before. Janice From: jeff bernier Sent: Wednesday, August 29, 2012 10:36 AM To: tmic-list@eskimo.com Subject: [TMIC] tm and the lungs ive been having a debate with another tmr on face book over this,she insist that tm can leave scar tissue and cause inflamation of the lungs,in all the research ive done over the last 13 years i have never heard of this,am i wrong?
Re: [TMIC] tm and the lungs
Thanks Janice. You know I have really enjoyed this machine. I get much better rest now. I thought I would hate it.Cody From: Janice Nichols Sent: Thursday, August 30, 2012 7:31 PM To: Cody ; john snodgrass Cc: transverse myelitis Subject: Re: [TMIC] tm and the lungs In everything I have read on TM and the problems that go with it, I would say you are right when you say we are compromised with our immune systems.Hope you get to where you will not need the bipap machine for long. Janice From: Cody Sent: Thursday, August 30, 2012 1:36 PM To: john snodgrass Cc: transverse myelitis Subject: Re: [TMIC] tm and the lungs I was in ICU last December for two weeks with I very serious lung infection that required antibiotics into my bloodstream with a pic line and with incubation and feeding tubes. The doctors told me they could not tell if the infection began in my lungs or my bladder. I now have to use a bipap machine when I sleep. Still don't know if it was related my TM but my guess is the TM has compromised my entire immune system. I had an entire regiment of specialist including pulmonologist, neurologist, internist, radiologist, gastroenterologist, and probably others that I forgot. Anyway I was a pretty sick guy but they got me fixed..Cody in Austin Sent from my iPad On Aug 30, 2012, at 9:57 AM, john snodgrass jcs...@yahoo.com wrote: makes sense. -- From: Mary Anne Egan mae...@thestettlergroup.com To: john snodgrass jcs...@yahoo.com Cc: transverse myelitis tmic-list@eskimo.com Sent: Wednesday, August 29, 2012 8:10 PM Subject: Re: [TMIC] tm and the lungs My daughter has lung issues second to tm but it is due to her level of loss which causes lung issues and weakness which results in her scarring etc Make sense? Mary Anne Egan Sent from my iPhone On Aug 29, 2012, at 6:45 PM, john snodgrass jcs...@yahoo.com wrote: i would wonder about it in that the nervous system can effect the lungs,,,like Jim,,,so perhaps the spasms or whatever happens to those that have the lung troubhle just may have scar tissue,,but i would think that it would be to those that are using a ventilator From: Janice Nichols jan...@centurytel.net To: jeff bernier jeffsmokeea...@yahoo.com; tmic-list@eskimo.com Sent: Wednesday, August 29, 2012 6:19 PM Subject: Re: [TMIC] tm and the lungs Have never heard of that before. Janice From: jeff bernier Sent: Wednesday, August 29, 2012 10:36 AM To: tmic-list@eskimo.com Subject: [TMIC] tm and the lungs ive been having a debate with another tmr on face book over this,she insist that tm can leave scar tissue and cause inflamation of the lungs,in all the research ive done over the last 13 years i have never heard of this,am i wrong?
[TMIC] tm and the lungs
ive been having a debate with another tmr on face book over this,she insist that tm can leave scar tissue and cause inflamation of the lungs,in all the research ive done over the last 13 years i have never heard of this,am i wrong?
Re: [TMIC] tm and the lungs
If there's no evidence then that is the end of it, right? Dalton From: jeff bernier jeffsmokeea...@yahoo.com Date: Wednesday, 29 January 2012 11:36 AM To: tmic-list@eskimo.com Subject: [TMIC] tm and the lungs Resent-From: tmic-list@eskimo.com Resent-Date: Wed, 29 Aug 2012 08:36:40 -0700 ive been having a debate with another tmr on face book over this,she insist that tm can leave scar tissue and cause inflamation of the lungs,in all the research ive done over the last 13 years i have never heard of this,am i wrong?
Re: [TMIC] tm and the lungs
Have never heard of that before. Janice From: jeff bernier Sent: Wednesday, August 29, 2012 10:36 AM To: tmic-list@eskimo.com Subject: [TMIC] tm and the lungs ive been having a debate with another tmr on face book over this,she insist that tm can leave scar tissue and cause inflamation of the lungs,in all the research ive done over the last 13 years i have never heard of this,am i wrong?
Re: [TMIC] tm and the lungs
i would wonder about it in that the nervous system can effect the lungs,,,like Jim,,,so perhaps the spasms or whatever happens to those that have the lung troubhle just may have scar tissue,,but i would think that it would be to those that are using a ventilator From: Janice Nichols jan...@centurytel.net To: jeff bernier jeffsmokeea...@yahoo.com; tmic-list@eskimo.com Sent: Wednesday, August 29, 2012 6:19 PM Subject: Re: [TMIC] tm and the lungs Have never heard of that before. Janice From: jeff bernier Sent: Wednesday, August 29, 2012 10:36 AM To: tmic-list@eskimo.com Subject: [TMIC] tm and the lungs ive been having a debate with another tmr on face book over this,she insist that tm can leave scar tissue and cause inflamation of the lungs,in all the research ive done over the last 13 years i have never heard of this,am i wrong?
Re: [TMIC] tm and the lungs
My daughter has lung issues second to tm but it is due to her level of loss which causes lung issues and weakness which results in her scarring etc Make sense? Mary Anne Egan Sent from my iPhone On Aug 29, 2012, at 6:45 PM, john snodgrass jcs...@yahoo.com wrote: i would wonder about it in that the nervous system can effect the lungs,,,like Jim,,,so perhaps the spasms or whatever happens to those that have the lung troubhle just may have scar tissue,,but i would think that it would be to those that are using a ventilator From: Janice Nichols jan...@centurytel.net To: jeff bernier jeffsmokeea...@yahoo.com; tmic-list@eskimo.com Sent: Wednesday, August 29, 2012 6:19 PM Subject: Re: [TMIC] tm and the lungs Have never heard of that before. Janice From: jeff bernier Sent: Wednesday, August 29, 2012 10:36 AM To: tmic-list@eskimo.com Subject: [TMIC] tm and the lungs ive been having a debate with another tmr on face book over this,she insist that tm can leave scar tissue and cause inflamation of the lungs,in all the research ive done over the last 13 years i have never heard of this,am i wrong?
Re: [TMIC] TM Question
Causes of Transverse Myelopathy and Myelitis Transverse myelitis may occur in isolation or in the setting of another illness. When it occurs without apparent underlying cause, it is referred to as idiopathic. Idiopathic transverse myelitis is assumed to be a result of abnormal activation of the immune system against the spinal cord. http://www.myelitis.org/tm.htm So we're hit with Transverse Myelitis, but we're left with Transverse Myelopathy. Todd in CC, TX --- On Mon, 3/5/12, Carol E snow121...@hotmail.com wrote: From: Carol E snow121...@hotmail.com Subject: [TMIC] TM Question To: tmic-list@eskimo.com Date: Monday, March 5, 2012, 11:39 AM I curious about the proper way to explain our affliction. Do we currently have TM or we had it when we first became ill? Is it like Polio? It came, crippled and you no longer have Polio, but you do have the destruction that it left behind. Thanks for your help in explaining this to me. Carol Worrying does not empty tomorrow of its troubles; It empties today of its strengths.
[TMIC] TM Question
I curious about the proper way to explain our affliction.Do we currently have TM or we had it when we first became ill?Is it like Polio? It came, crippled and you no longer have Polio, but you do have the destruction that it left behind. Thanks for your help in explaining this to me. Carol Worrying does not empty tomorrow of its troubles; It empties today of its strengths.
Re: [TMIC] TM Question
Hello Carol My neurologist told me that I had an attack of transverse myelitis that damaged my spinal cord, and now I am dealing with the residual damage. In that case, it is like polio. I think that when we have flareups then we have "myelitis" which is an inflammation of the area of the cord that was damaged - but not another TM attack. On 05/03/2012 10:39 AM, Carol E wrote: I curious about the proper way to explain our affliction. Do we currently have TM or we had it when we first became ill? Is it like Polio? It came, crippled and you no longer have Polio, but you do have the destruction that it left behind. Thanks for your help in explaining this to me. Carol Worrying does not empty tomorrow of its troubles; It empties today of its strengths. attachment: j_dunn.vcf
Re: [TMIC] TM Question
Carol I always say I have TM, and I usually say it is an auto-immune disease even though my TM was said to be idopathic. Patti On Mon, Mar 5, 2012 at 11:39 AM, Carol E snow121...@hotmail.com wrote: I curious about the proper way to explain our affliction. Do we currently have TM or we had it when we first became ill? Is it like Polio? It came, crippled and you no longer have Polio, but you do have the destruction that it left behind. Thanks for your help in explaining this to me. Carol Worrying does not empty tomorrow of its troubles; It empties today of its strengths.
Re: [TMIC] TM Question
I have had two attacks of TM - 20 years apart. Both times there was a lesion on T7 in my spinal cord caused by a twisting motion while playing tennis. I do believe my immune system was compromised prior to my injuries. I do tell people I have TM, and am still working on my recovvery... but nobody has ever heard of it. Susan K - Phx AZ On Mar 5, 2012, at 11:18 AM, Pat Cooley wrote: Carol I always say I have TM, and I usually say it is an auto-immune disease even though my TM was said to be idopathic. Patti On Mon, Mar 5, 2012 at 11:39 AM, Carol E snow121...@hotmail.com wrote: I curious about the proper way to explain our affliction. Do we currently have TM or we had it when we first became ill? Is it like Polio? It came, crippled and you no longer have Polio, but you do have the destruction that it left behind. Thanks for your help in explaining this to me. Carol Worrying does not empty tomorrow of its troubles; It empties today of its strengths.
Re: [TMIC] TM Question
Susan , you were playing tennis after TM struck!?!?!?! How could you do that?I would be sprawled all over the court every time I moved. Can you play tennis now? Janice -Original Message- From: Susan Kleinz Sent: Monday, March 05, 2012 1:18 PM To: Pat Cooley Cc: Carol E ; tmic-list@eskimo.com Subject: Re: [TMIC] TM Question I have had two attacks of TM - 20 years apart. Both times there was a lesion on T7 in my spinal cord caused by a twisting motion while playing tennis. I do believe my immune system was compromised prior to my injuries. I do tell people I have TM, and am still working on my recovvery... but nobody has ever heard of it. Susan K - Phx AZ On Mar 5, 2012, at 11:18 AM, Pat Cooley wrote: Carol I always say I have TM, and I usually say it is an auto-immune disease even though my TM was said to be idopathic. Patti On Mon, Mar 5, 2012 at 11:39 AM, Carol E snow121...@hotmail.com wrote: I curious about the proper way to explain our affliction. Do we currently have TM or we had it when we first became ill? Is it like Polio? It came, crippled and you no longer have Polio, but you do have the destruction that it left behind. Thanks for your help in explaining this to me. Carol Worrying does not empty tomorrow of its troubles; It empties today of its strengths.
Re: [TMIC] TM Question
Carol, I was told that TM hit like a tornado and we were left to care for the problems it left behind.All the word “transverse” means is that both sides of the spine were affected.It is the “myelitis” that delivers the bomb! It may be correct to say that TM struck, just like Polio, and we deal with the aftermath. Janice From: Carol E Sent: Monday, March 05, 2012 11:39 AM To: tmic-list@eskimo.com Subject: [TMIC] TM Question I curious about the proper way to explain our affliction. Do we currently have TM or we had it when we first became ill? Is it like Polio? It came, crippled and you no longer have Polio, but you do have the destruction that it left behind. Thanks for your help in explaining this to me. Carol Worrying does not empty tomorrow of its troubles; It empties today of its strengths.
Re: [TMIC] TM and the brain
John no need to apologize. Questioning is how we learn. Patti On Sat, Jan 14, 2012 at 9:18 PM, john snodgrass jcs...@yahoo.com wrote: I apologize for any inconvenience I have caused in the questioning of anything concerning TM and the brain. it really doesn't matter if I am right or wrong in these matters. it doesn't fix anything to be right and it doesn't break anything to be wrong. I would rather be wrong and quiet than right and argumentative. again,,,my apologies
[TMIC] TM and the brain
I apologize for any inconvenience I have caused in the questioning of anything concerning TM and the brain. it really doesn't matter if I am right or wrong in these matters. it doesn't fix anything to be right and it doesn't break anything to be wrong. I would rather be wrong and quiet than right and argumentative. again,,,my apologies
Re: [TMIC] TM and ambient temperature
I don't seem to have any problem with heat but I seem to suffer more with the cold weather and living in N.E. Wisconsin you can imagine how I hate winter. Fortunately, we have a wood burning stove in the living room and we can crank it up Patti - Wisconsin On Fri, Jan 6, 2012 at 3:20 PM, Janice Nichols jan...@centurytel.netwrote: Ryota, All I can say about temperatures is that I can not tolerate warm temperatures.My head starts sweating and I feel light headed. I just get weak all over.Our heating bills are low in the winter because we keep the house so cool. Of course, our summer cooling bills are fairly high because we keep it pretty cool in the house.We live in Missouri in the US. I guess we are all different. Janice *From:* Ryota Nishino write2ry...@gmail.com *Sent:* Saturday, December 31, 2011 9:56 PM *To:* TM list tmic-list@eskimo.com *Subject:* [TMIC] TM and ambient temperature Hello, Following our recent discussion, I think I could report one thing to you. I moved from New Zealand to Fiji in June 2011 as I got a new job here. Within three days of arrival in Fiji, the 'pins and needles' sensations across my belly disappeared and receded to mid thigh. I had had TM since Oct 2010. This may be the full extent of my recovery, though. Some people say TM can exacerbate under heat. But my GP back in New Zealand, who operates on an 'integrative medicine' paradigm, commented that if the ambient temperature is too low, the energy gets chewed up thinking about coping with the cold. Certainly his comment rings true to me. TM has accentuated my aversion to winter. I lived in Christchurch, NZ, shaking since September 2009. Cold and damp winter. Unlike North America, central heating is unheard of. The 'stiff upper lip' mentality is encouraged to endure the poor heating apparatus and appalling housing. Any thoughts on TM and ambient temperature? Ryota
Re: [TMIC] TM and ambient temperature
Ryota, All I can say about temperatures is that I can not tolerate warm temperatures. My head starts sweating and I feel light headed. I just get weak all over. Our heating bills are low in the winter because we keep the house so cool. Of course, our summer cooling bills are fairly high because we keep it pretty cool in the house.We live in Missouri in the US. I guess we are all different. Janice From: Ryota Nishino Sent: Saturday, December 31, 2011 9:56 PM To: TM list Subject: [TMIC] TM and ambient temperature Hello, Following our recent discussion, I think I could report one thing to you. I moved from New Zealand to Fiji in June 2011 as I got a new job here. Within three days of arrival in Fiji, the 'pins and needles' sensations across my belly disappeared and receded to mid thigh. I had had TM since Oct 2010. This may be the full extent of my recovery, though. Some people say TM can exacerbate under heat. But my GP back in New Zealand, who operates on an 'integrative medicine' paradigm, commented that if the ambient temperature is too low, the energy gets chewed up thinking about coping with the cold. Certainly his comment rings true to me. TM has accentuated my aversion to winter. I lived in Christchurch, NZ, shaking since September 2009. Cold and damp winter. Unlike North America, central heating is unheard of. The 'stiff upper lip' mentality is encouraged to endure the poor heating apparatus and appalling housing. Any thoughts on TM and ambient temperature? Ryota
[TMIC] TM and ambient temperature
Hello, Following our recent discussion, I think I could report one thing to you. I moved from New Zealand to Fiji in June 2011 as I got a new job here. Within three days of arrival in Fiji, the 'pins and needles' sensations across my belly disappeared and receded to mid thigh. I had had TM since Oct 2010. This may be the full extent of my recovery, though. Some people say TM can exacerbate under heat. But my GP back in New Zealand, who operates on an 'integrative medicine' paradigm, commented that if the ambient temperature is too low, the energy gets chewed up thinking about coping with the cold. Certainly his comment rings true to me. TM has accentuated my aversion to winter. I lived in Christchurch, NZ, shaking since September 2009. Cold and damp winter. Unlike North America, central heating is unheard of. The 'stiff upper lip' mentality is encouraged to endure the poor heating apparatus and appalling housing. Any thoughts on TM and ambient temperature? Ryota
Re: [TMIC] tm anniversary
Hi Cheryl, It's been so long..I don't remember my tm anniversary, about 23 years. HUGS Kevin rn11...@yahoo.com wrote: Hi Everyone, Well,today was my 16th anniversary with tm. Had a short cry and then went on as usual.I'm just sick of this whole thing. Cheryl in humid Easthampton,MA
Re: [TMIC] tm anniversary
You deserve to treat yourself to something special – just for you. It can do wonders! Janice From: rn11...@yahoo.com Sent: Saturday, August 13, 2011 8:08 PM To: tmic Subject: [TMIC] tm anniversary Hi Everyone, Well,today was my 16th anniversary with tm. Had a short cry and then went on as usual.I'm just sick of this whole thing. Cheryl in humid Easthampton,MAwlEmoticon-sadsmile[1].pngwlEmoticon-smile[1].png
[TMIC] tm anniversary
Hi Everyone, Well,today was my 16th anniversary with tm. Had a short cry and then went on as usual.I'm just sick of this whole thing. Cheryl in humid Easthampton,MA
Re: [TMIC] tm anniversary
tomorrow will be better --- On Sat, 8/13/11, rn11...@yahoo.com rn11...@yahoo.com wrote: From: rn11...@yahoo.com rn11...@yahoo.com Subject: [TMIC] tm anniversary To: tmic tmic-list@eskimo.com Date: Saturday, August 13, 2011, 9:08 PM Hi Everyone, Well,today was my 16th anniversary with tm. Had a short cry and then went on as usual.I'm just sick of this whole thing. Cheryl in humid Easthampton,MA
Re: [TMIC] tm anniversary
Hi Cheryl ~ I hope the short cry was cleansing ~ most of the time I think they help to keep the Big ones at bay where they belong. And you, sweet lady, have quite a load on your plate now so it's very important that you keep checking in ~ we need to know how you're doing. Linda in hot/dry Eagle, ID - Original Message - From: rn11...@yahoo.commailto:rn11...@yahoo.com To: tmicmailto:tmic-list@eskimo.com Sent: Saturday, August 13, 2011 7:08 PM Subject: [TMIC] tm anniversary Hi Everyone, Well,today was my 16th anniversary with tm. Had a short cry and then went on as usual.I'm just sick of this whole thing. Cheryl in humid Easthampton,MA
RE: [TMIC] TM video Greg Sapp posted today
I watched it this morning! I recognized a lot of faces, including my daughter, Ashlee Black! Well done Greg!! Tracey L. Black Certified Insurance Service Representative Hockley O'Donnell Insurance Agency PO Box 3039, 132 Buford Avenue Gettysburg, PA 17325 Phone: 717-334-6741, x 29 Fax: 717-334-3414 Office hours: 8:00 a.m. - 5:00 p.m. My hours: 9:00 a.m. - 5:00 p.m. Insurance coverage cannot be bound or altered without confirmation from a licensed agent. If you do not hear from us within 1 business day, please re-contact us in case your information has not be retained. This message contains confidential information for use only by its intended recipients and may contain information that is proprietary, privileged, and protected under the law (including Gramm-Leach-Bliley and HIPAA/HITECH). If you are not the named addressee, you are hereby notified that any use of, distribution of, copying, or reliance upon the contents of this e-mail is strictly prohibited and may result in criminal or civil penalties. Please notify the sender immediately by e-mail if you have received this by mistake and delete this e-mail from your system. Thank you. From: Gary Thomas [mailto:gbthomas8...@sbcglobal.net] Sent: Monday, July 18, 2011 9:45 PM To: kimharrison...@comcast.net; TMIC Subject: Re: [TMIC] TM video Greg Sapp posted today Thanks for bringing this to our attention. The video was well done, I think. Gary in Michigan - Original Message - From: kimharrison...@comcast.net To: TMIC mailto:tmic-list@eskimo.com Sent: Monday, July 18, 2011 5:33 PM Subject: [TMIC] TM video Greg Sapp posted today http://www.youtube.com/watch?v=T_rUdaSxWVc image005.jpgimage006.jpg
[TMIC] TM video Greg Sapp posted today
http://www.youtube.com/watch?v=T_rUdaSxWVc
Re: [TMIC] TM video Greg Sapp posted today
Thanks for bringing this to our attention. The video was well done, I think. Gary in Michigan - Original Message - From: kimharrison...@comcast.net To: TMIC Sent: Monday, July 18, 2011 5:33 PM Subject: [TMIC] TM video Greg Sapp posted today http://www.youtube.com/watch?v=T_rUdaSxWVc
RE: [TMIC] TM
My husband has a 1 lift inside of his shoe that was made especially for him due to the same problem..one leg shorter than the other. The orthotic is removable so he can put it in whatever shoe he wears. The one that is shorter is the one that has been effected by the spinal cord injury. _ From: L T CHERPESKI [mailto:cherp...@msn.com] Sent: Tuesday, January 18, 2011 12:20 AM To: tmic-list@eskimo.com; Janice Nichols Subject: Re: [TMIC] TM Janice, I'm not sure if I wrote about it, but when I started another round of physical therapy several months ago, the therapist found that my left leg was one inch shorter than the right. And that really doesn't surprise me when I think about walking/wobbling with a cane for years. Our gait is slightly off The therapist worked on me from top of my neck to my toes for almost 2 hours, which didn't feel very good, but did I ever feel like a new person when she was done and I stood up!! Good luck, hope it all goes well and you find the relief you're looking for. Linda C (Eagle, ID) - Original Message - From: Janice Nichols mailto:jan...@centurytel.net To: tmic-list@eskimo.com Sent: Monday, January 17, 2011 9:14 PM Subject: [TMIC] TM Dear Friends, Some months ago, one of you wrote in asking if anyone had a problem with maybe 1 leg being shorter than the other since having TM.At the time, I had not heard of that being a possibility. I now know what whoever was talking about.My legs are still the same length and my spine is straight, but I am walking now as though one leg is slightly longer than the other. It is caused by the myelitis and they tell me with therapy, they can fix it - I hope.So, to whoever wrote in asking about that, I hope they got help for it.Something happens in the upper back hip area. Anyway, I am working on fixing this and hope no one else has this problem. Janice
Re: [TMIC] TM
Hi Janice, I may have written about that. My left leg is 1 inch longer than the right. While in rehab learning to walk again,I was very unsteady. Unfortunately,I locked my left knee,which stretched the tendon,making the leg lengthen. None of the P.T. staff realized what I was doing. Now my gait is off because of the difference in the length of my legs. Cheryl in snowy Easthampton,MA --- On Mon, 1/17/11, Janice Nichols jan...@centurytel.net wrote: From: Janice Nichols jan...@centurytel.net Subject: [TMIC] TM To: tmic-list@eskimo.com Date: Monday, January 17, 2011, 11:14 PM Dear Friends, Some months ago, one of you wrote in asking if anyone had a problem with maybe 1 leg being shorter than the other since having TM. At the time, I had not heard of that being a possibility. I now know what whoever was talking about. My legs are still the same length and my spine is straight, but I am walking now as though one leg is slightly longer than the other. It is caused by the myelitis and they tell me with therapy, they can fix it - I hope. So, to whoever wrote in asking about that, I hope they got help for it. Something happens in the upper back hip area. Anyway, I am working on fixing this and hope no one else has this problem. Janice
Re: [TMIC] TM
Hi Emily - my left leg is also the one that has been the most effected by the lesions I had in my spinal cord. - Original Message - From: Emilymailto:em...@telephonelady.com To: tmic-list@eskimo.commailto:tmic-list@eskimo.com Sent: Tuesday, January 18, 2011 4:53 AM Subject: RE: [TMIC] TM My husband has a 1 lift inside of his shoe that was made especially for him due to the same problem..one leg shorter than the other. The orthotic is removable so he can put it in whatever shoe he wears. The one that is shorter is the one that has been effected by the spinal cord injury. -- From: L T CHERPESKI [mailto:cherp...@msn.com] Sent: Tuesday, January 18, 2011 12:20 AM To: tmic-list@eskimo.com; Janice Nichols Subject: Re: [TMIC] TM Janice, I'm not sure if I wrote about it, but when I started another round of physical therapy several months ago, the therapist found that my left leg was one inch shorter than the right. And that really doesn't surprise me when I think about walking/wobbling with a cane for years. Our gait is slightly off The therapist worked on me from top of my neck to my toes for almost 2 hours, which didn't feel very good, but did I ever feel like a new person when she was done and I stood up!! Good luck, hope it all goes well and you find the relief you're looking for. Linda C (Eagle, ID) - Original Message - From: Janice Nicholsmailto:jan...@centurytel.net To: tmic-list@eskimo.commailto:tmic-list@eskimo.com Sent: Monday, January 17, 2011 9:14 PM Subject: [TMIC] TM Dear Friends, Some months ago, one of you wrote in asking if anyone had a problem with maybe 1 leg being shorter than the other since having TM.At the time, I had not heard of that being a possibility. I now know what whoever was talking about.My legs are still the same length and my spine is straight, but I am walking now as though one leg is slightly longer than the other. It is caused by the myelitis and they tell me with therapy, they can fix it - I hope.So, to whoever wrote in asking about that, I hope they got help for it.Something happens in the upper back hip area. Anyway, I am working on fixing this and hope no one else has this problem. Janice
Re: [TMIC] TM
I use a cane out of the house and do some walking without the cane in the house. Not totally graceful, but I can do it. Doctor’s said I wouldn’t walk, but had to prove them wrong. Nothing like a hard head! I also am 5’ 2” - used to be 5’ 4”.I prefer 5’ 4”! I will be getting into aqua therapy shortly – I love it and did a lot of it before TM.That is one reason the doc’s said I did as well as I did. Plus, I have a hard head! Janice From: L T CHERPESKI Sent: Monday, January 17, 2011 11:56 PM To: tmic-list@eskimo.com ; Janice Nichols Subject: Re: [TMIC] TM I was scheduled to start PT that day, but therapist wouldn't let me start before she examined me because she saw that my gait was really off ~ She worked on me for about 2 hours, and then I started my aqua therapy and did that for about 6 months. That helped me a lot! Long drive though, so I'm looking for something closer to home. And as of today my legs are still the same length. (short! because I'm a very tall 5' 2 : ) Are you now or have you been walking with a cane? When I'm tired and have little energy, I have no business being any place except my house because I know that's really hard on my entire body. True for all or most of us, I'm sure. Linda - Original Message - From: Janice Nichols To: L T CHERPESKI ; tmic-list@eskimo.com Sent: Monday, January 17, 2011 10:25 PM Subject: Re: [TMIC] TM You only went 1 time to the therapist? I will be going many times to get me to walk straight again. You are right about our gait causing a lot of the problem.They seem pretty positive they can do it though. They felt it was a bunching up in my hip that was the problem. Hope we can fix it. Janice From: L T CHERPESKI Sent: Monday, January 17, 2011 11:20 PM To: tmic-list@eskimo.com ; Janice Nichols Subject: Re: [TMIC] TM Janice, I'm not sure if I wrote about it, but when I started another round of physical therapy several months ago, the therapist found that my left leg was one inch shorter than the right. And that really doesn't surprise me when I think about walking/wobbling with a cane for years. Our gait is slightly off The therapist worked on me from top of my neck to my toes for almost 2 hours, which didn't feel very good, but did I ever feel like a new person when she was done and I stood up!! Good luck, hope it all goes well and you find the relief you're looking for. Linda C (Eagle, ID) - Original Message - From: Janice Nichols To: tmic-list@eskimo.com Sent: Monday, January 17, 2011 9:14 PM Subject: [TMIC] TM Dear Friends, Some months ago, one of you wrote in asking if anyone had a problem with maybe 1 leg being shorter than the other since having TM.At the time, I had not heard of that being a possibility. I now know what whoever was talking about.My legs are still the same length and my spine is straight, but I am walking now as though one leg is slightly longer than the other. It is caused by the myelitis and they tell me with therapy, they can fix it - I hope.So, to whoever wrote in asking about that, I hope they got help for it.Something happens in the upper back hip area. Anyway, I am working on fixing this and hope no one else has this problem. Janice
Re: [TMIC] TM
It is my right leg that is affected and is the one that has been the weakest all along. I may have to go to a lift, but my therapist says he can fix me. We’ll see. Emily, what all can your husband do? How did TM leave him? Janice From: Emily Sent: Tuesday, January 18, 2011 5:53 AM To: tmic-list@eskimo.com Subject: RE: [TMIC] TM My husband has a 1” lift inside of his shoe that was made especially for him due to the same problem….one leg shorter than the other. The orthotic is removable so he can put it in whatever shoe he wears. The one that is shorter is the one that has been effected by the spinal cord injury. From: L T CHERPESKI [mailto:cherp...@msn.com] Sent: Tuesday, January 18, 2011 12:20 AM To: tmic-list@eskimo.com; Janice Nichols Subject: Re: [TMIC] TM Janice, I'm not sure if I wrote about it, but when I started another round of physical therapy several months ago, the therapist found that my left leg was one inch shorter than the right. And that really doesn't surprise me when I think about walking/wobbling with a cane for years. Our gait is slightly off The therapist worked on me from top of my neck to my toes for almost 2 hours, which didn't feel very good, but did I ever feel like a new person when she was done and I stood up!! Good luck, hope it all goes well and you find the relief you're looking for. Linda C (Eagle, ID) - Original Message - From: Janice Nichols To: tmic-list@eskimo.com Sent: Monday, January 17, 2011 9:14 PM Subject: [TMIC] TM Dear Friends, Some months ago, one of you wrote in asking if anyone had a problem with maybe 1 leg being shorter than the other since having TM.At the time, I had not heard of that being a possibility. I now know what whoever was talking about. My legs are still the same length and my spine is straight, but I am walking now as though one leg is slightly longer than the other. It is caused by the myelitis and they tell me with therapy, they can fix it - I hope.So, to whoever wrote in asking about that, I hope they got help for it.Something happens in the upper back hip area. Anyway, I am working on fixing this and hope no one else has this problem. Janice
Re: [TMIC] TM
If at all possible, keep your back perfectly straight at all times. Janice From: john snodgrass Sent: Tuesday, January 18, 2011 6:03 AM To: transverse myelitis Subject: RE: [TMIC] TM hummm, something to watchout for after walking funny for 3 years. --- On Tue, 1/18/11, Emily em...@telephonelady.com wrote: From: Emily em...@telephonelady.com Subject: RE: [TMIC] TM To: tmic-list@eskimo.com Date: Tuesday, January 18, 2011, 6:53 AM My husband has a 1” lift inside of his shoe that was made especially for him due to the same problem….one leg shorter than the other. The orthotic is removable so he can put it in whatever shoe he wears. The one that is shorter is the one that has been effected by the spinal cord injury. From: L T CHERPESKI [mailto:cherp...@msn.com] Sent: Tuesday, January 18, 2011 12:20 AM To: tmic-list@eskimo.com; Janice Nichols Subject: Re: [TMIC] TM Janice, I'm not sure if I wrote about it, but when I started another round of physical therapy several months ago, the therapist found that my left leg was one inch shorter than the right. And that really doesn't surprise me when I think about walking/wobbling with a cane for years. Our gait is slightly off The therapist worked on me from top of my neck to my toes for almost 2 hours, which didn't feel very good, but did I ever feel like a new person when she was done and I stood up!! Good luck, hope it all goes well and you find the relief you're looking for. Linda C (Eagle, ID) - Original Message - From: Janice Nichols To: tmic-list@eskimo.com Sent: Monday, January 17, 2011 9:14 PM Subject: [TMIC] TM Dear Friends, Some months ago, one of you wrote in asking if anyone had a problem with maybe 1 leg being shorter than the other since having TM.At the time, I had not heard of that being a possibility. I now know what whoever was talking about.My legs are still the same length and my spine is straight, but I am walking now as though one leg is slightly longer than the other. It is caused by the myelitis and they tell me with therapy, they can fix it - I hope. So, to whoever wrote in asking about that, I hope they got help for it.Something happens in the upper back hip area. Anyway, I am working on fixing this and hope no one else has this problem. Janice
Re: [TMIC] TM
But they tell me that there is not a difference in the leg length, the problem is in the hip area and needs stretching out.Maybe that is the same thing, don’t know. Have any of you with this problem had therapy that took care of the problem? Janice From: rn11...@yahoo.com Sent: Tuesday, January 18, 2011 6:04 AM To: Janice Nichols Cc: tmic-list@eskimo.com Subject: Re: [TMIC] TM Hi Janice, I may have written about that. My left leg is 1 inch longer than the right. While in rehab learning to walk again,I was very unsteady. Unfortunately,I locked my left knee,which stretched the tendon,making the leg lengthen. None of the P.T. staff realized what I was doing. Now my gait is off because of the difference in the length of my legs. Cheryl in snowy Easthampton,MA --- On Mon, 1/17/11, Janice Nichols jan...@centurytel.net wrote: From: Janice Nichols jan...@centurytel.net Subject: [TMIC] TM To: tmic-list@eskimo.com Date: Monday, January 17, 2011, 11:14 PM Dear Friends, Some months ago, one of you wrote in asking if anyone had a problem with maybe 1 leg being shorter than the other since having TM.At the time, I had not heard of that being a possibility. I now know what whoever was talking about.My legs are still the same length and my spine is straight, but I am walking now as though one leg is slightly longer than the other. It is caused by the myelitis and they tell me with therapy, they can fix it - I hope. So, to whoever wrote in asking about that, I hope they got help for it.Something happens in the upper back hip area. Anyway, I am working on fixing this and hope no one else has this problem. Janice
Re: [TMIC] TM
Emily, I have no idea what to say to you. You and your husband are in hell right now.But, remember that the doctors are working with you and your husband. Medical science can be stretched to do miraculous things. You are certainly a part of us and please continue to do so.We want to hear from you on a regular basis. I hope you will tell us about the outcome of tomorrow. Blessings to you and your husband, Janice From: Emily Sent: Tuesday, January 18, 2011 9:54 AM To: 'Janice Nichols' ; tmic-list@eskimo.com Subject: RE: [TMIC] TM My husband was originally diagnosed with TM on September 4th of this year. He was put on steroids and was weaned off of them orally. At that point he was able to walk about 50 feet with a walker but was pretty much wheelchair bound. The lesion was between T7-11 with enhancement at T9. Within a few days after the steroids stopped, he would get a relapse. This happened a couple of times…..and then the docs scratched their heads and said TM doesn’t do this so they began looking at other possibilities. On November 20th they discovered that he had non-Hodgkin’s LYMPHOMA….and the lesion they saw was caused from Lymphoma. He is the only known case in the USA at this time and is currently being written up in the Medical Journal because lymphoma is NEVER found in the spinal cord. It is so rare that they didn’t know what the correct course of treatment and the head of oncology at Pennsylvania Hospital had to contact colleagues in various states to see if they had any experience with this. The good news is that the lymphoma is curable…..the bad news they don’t have any history as to what the prognosis could be regarding the damage done in the spine. At this point he is much worst mobility wise….he can only sit in the wheelchair for the max of 3 hours. He is extremely weak but that could be the chemo. We are going tomorrow for his 3rd chemo treatment and we are going to ask lots of questions because he is currently in a rehab and is not making any progress. He has only been in our home for a total of 26 days since the end of August. He has used up all of his Medicare hospital days and has dipped into his live-time reserve hospital days. It has been a long and grueling 5 months and it doesn’t look like it is getting any better. Along the way he has had pulmonary embolism, insertion of vena cava filter, pneumonia, a testicle removed due to urinary tract infection, Atrial Defib due to the chemo messing up his electrolytes. He is totally incontinent with catheter and diaper. He use to be able to transfer using a walker now he has to use transfer board because of the weakness. Don’t know what is going on and hope to find out something tomorrow when he goes for treatment. Although he doesn’t have TM, I continue to read these emails because when push comes to shove….it is a spinal cord injury regardless of what caused it. My heart aches for all of you as I read about pain, sensations, spasms, seizures, medications, etc. He too has some of this going on. I pray for his recovery but I also pray for each and every one of you!!! It just isn’t fair that there isn’t some cure that is available at a reasonable price to each and every one of you. I hope medical research quickly finds a way that all of you affected by a spinal cord injury finds relief from the horror of all of it and your lives can be restored to what you once had. In the meantime, stay positive, take one day at a time, pray, and keep a good mental attitude. Don’t let this pull you down because if you do it will only make your life and the people around you more miserable. Find things to do that will keep your mind off of what is going on in your body. Dump all of your problems on this fantastic resource when you are having a bad day. We are here for each other. Love and virtual hugs to each and every one of you!!! Emily Meyers New Jersey From: Janice Nichols [mailto:jan...@centurytel.net] Sent: Tuesday, January 18, 2011 10:30 AM To: em...@telephonelady.com; tmic-list@eskimo.com Subject: Re: [TMIC] TM It is my right leg that is affected and is the one that has been the weakest all along. I may have to go to a lift, but my therapist says he can fix me. We’ll see. Emily, what all can your husband do? How did TM leave him? Janice From: Emily Sent: Tuesday, January 18, 2011 5:53 AM To: tmic-list@eskimo.com Subject: RE: [TMIC] TM My husband has a 1” lift inside of his shoe that was made especially for him due to the same problem….one leg shorter than the other. The orthotic is removable so he can put it in whatever shoe he wears. The one that is shorter is the one that has been effected by the spinal cord injury. From: L T
[TMIC] TM
Dear Friends, Some months ago, one of you wrote in asking if anyone had a problem with maybe 1 leg being shorter than the other since having TM.At the time, I had not heard of that being a possibility. I now know what whoever was talking about. My legs are still the same length and my spine is straight, but I am walking now as though one leg is slightly longer than the other. It is caused by the myelitis and they tell me with therapy, they can fix it - I hope.So, to whoever wrote in asking about that, I hope they got help for it.Something happens in the upper back hip area. Anyway, I am working on fixing this and hope no one else has this problem. Janice
Re: [TMIC] TM
I was scheduled to start PT that day, but therapist wouldn't let me start before she examined me because she saw that my gait was really off ~ She worked on me for about 2 hours, and then I started my aqua therapy and did that for about 6 months. That helped me a lot! Long drive though, so I'm looking for something closer to home. And as of today my legs are still the same length. (short! because I'm a very tall 5' 2 : ) Are you now or have you been walking with a cane? When I'm tired and have little energy, I have no business being any place except my house because I know that's really hard on my entire body. True for all or most of us, I'm sure. Linda - Original Message - From: Janice Nicholsmailto:jan...@centurytel.net To: L T CHERPESKImailto:cherp...@msn.com ; tmic-list@eskimo.commailto:tmic-list@eskimo.com Sent: Monday, January 17, 2011 10:25 PM Subject: Re: [TMIC] TM You only went 1 time to the therapist? I will be going many times to get me to walk straight again. You are right about our gait causing a lot of the problem.They seem pretty positive they can do it though. They felt it was a bunching up in my hip that was the problem. Hope we can fix it. Janice From: L T CHERPESKImailto:cherp...@msn.com Sent: Monday, January 17, 2011 11:20 PM To: tmic-list@eskimo.commailto:tmic-list@eskimo.com ; Janice Nicholsmailto:jan...@centurytel.net Subject: Re: [TMIC] TM Janice, I'm not sure if I wrote about it, but when I started another round of physical therapy several months ago, the therapist found that my left leg was one inch shorter than the right. And that really doesn't surprise me when I think about walking/wobbling with a cane for years. Our gait is slightly off The therapist worked on me from top of my neck to my toes for almost 2 hours, which didn't feel very good, but did I ever feel like a new person when she was done and I stood up!! Good luck, hope it all goes well and you find the relief you're looking for. Linda C (Eagle, ID) - Original Message - From: Janice Nicholsmailto:jan...@centurytel.net To: tmic-list@eskimo.commailto:tmic-list@eskimo.com Sent: Monday, January 17, 2011 9:14 PM Subject: [TMIC] TM Dear Friends, Some months ago, one of you wrote in asking if anyone had a problem with maybe 1 leg being shorter than the other since having TM.At the time, I had not heard of that being a possibility. I now know what whoever was talking about.My legs are still the same length and my spine is straight, but I am walking now as though one leg is slightly longer than the other. It is caused by the myelitis and they tell me with therapy, they can fix it - I hope.So, to whoever wrote in asking about that, I hope they got help for it.Something happens in the upper back hip area. Anyway, I am working on fixing this and hope no one else has this problem. Janice
[TMIC] TM Support Group Meeting - January 22
The Southern California TM Support will be having it's next meeting at the Dayle McIntosh Center in Garden Grove, CA. I'm including the TMIC group in this notice in case anyone lives in the area and would like to join us. As usual we will meet from 12 noon to 4 PM and please bring a potluck dish. If you have any questions, give me a call at 714-638-5493. Happy Holidays to all of you. Cindy
[TMIC] TM Caregivers Group??
Emily, That is a great Idea !! How would you like to start the group? I know my caregiver would interested Take Care Frank attachment: image001.jpg
Re: [TMIC] TM Info request
Thank you Betty this info is awesome. My spirits have really been uplifted today .Your testimony is very encouraging, I have had TM since 2002 and I agree with you there is not a time frame for our healing. This is in the hands of God. I reuse to believe this healing will not take place .I regained most of my sensation back in my entire body. I have gone through everything almost everyone else have and at time I still do. I never put my focus on my illness,but on my healer. I just finished 10 weeks of therapy and now I am in a wellness program to aid in strengthening my muscles. My hands are numb most of the time. I can still use them to do most anything with. My feet and hands are hot and cold a lot of time now more than ever. I will not give up on believing I will not overcome this disease. I take care of my grandson who is autistic every day. When school starts I will start back to driving him too and from school .I keep going and keep believing that the next day will bring me closer to a healing. I pray to God for all, that we will be healed and get our lives back, and also thank Him for letting us see another day. If anyone have pain in their hip joints and weak ankles please tell me how you are coping with it. I know my ankles are weak and is causing my feet to turn. You should really see my shoes. I just returned from a Family Reunion in Chicago Via Cleveland and flew by myself. 5 hours sitting and it seemed like I held that position for 3 days afterward. I had my cane with me and used it and was not ashamed. I turned 61 on Sunday and I am really blessed in the Lord. It is not the TM that bothers me but the other diseases that attack my body. I had a life-threatening bout with MRSA in April and almost died. my blood was highly infected. I was going into renal failure with the right kidney and came out healed.That's one of the reasons I refuse to give up on our healing from this disease. God brought me out of that and He can bring me out of this. Be blessed in the Healer, Think on my signature. There is none so amazing as God There is none so amazing as God Peggy Wilson In a message dated 7/26/2010 8:21:03 P.M. US Mountain Standard Time, jan...@centurytel.net writes: Betty, thanks for chiming in and letting us get to know you and your situation. I wanted to tell you that some of us have had improvements several years after the 2-year mark.So never give up. Your symptoms - fatigue, skin sensations/not, tingly feelings under the skin, pain, banding - are what we are all dealing with, not to mention the balance and walking problems, for those who can walk. That is what is so great about this website. You can talk, vent, recommend, enlighten, etc.We can all learn/help from each other, whether it is emotional help or medical help.I am glad you are doing as well as you are and, please, keep emailing us. We can always use input. Janice From: _Beeclark_ (mailto:beecl...@aol.com) Sent: Monday, July 26, 2010 5:59 PM To: _tmic-l...@eskimo.com_ (mailto:tmic-list@eskimo.com) Subject: Re: [TMIC] TM Info request Hi Craig. My name is Betty, I'm 57 years old live in northern California. My journey into TM started the morning after Easter in April, 2006 (no previous symptoms or illness). I woke w/ a numb right arm. I also had intense pain around the back of my neck between my shoulder blades. Then I noticed both big toes felt numb. After the Dr. did an EKG, X-ray blood test, I went home to wait for results. That evening, both legs, besides feeling numb, started spasming got so bad, my husband went to an all-night pharmacy to get a Rx to get me through the night. At 2:00 the next afternoon my GP finally said to go to Emergency. After an hour-and-a-half MRI Spinal Tap, the on-call neurologist said I had TM, fortunately at C7 only. However, paralyzed by this time from the chest down w/no hand function, I spent 4 days in the hospital on Solumedrol treatments, which arrested the virus, then was x'ferred to a local recovery center for 4 wks of intensive physical occupational therapy where I regained most of the use of my legs arms/hands. My right leg is nearly completely recovered. I still have a hitch in my left leg went to PT 2X/week. I can walk – though somewhat unsteadily due to balance issues w/the left leg/foot (also intensified by the use of Neurontin/Gabapentin). I've been left w/ a kind of surface skin numbness... I have gross touch sensation (I can feel it if I rub my right leg or upper torso) h owever, if I'm scratched w/ something sharp, I don't feel it. My left leg (the bad one) has much less sensation. Ever since, I've spent every week 2X/wk w/a hand specialist because my hand function never returned completely. However small, I have gained progress over time in strength function thru the use
RE: [TMIC] TM Info request
I was diagnosed almost exactly a year ago. I had gone to the ER because someone at church noticed I was dragging my left leg and thought I might be having a stroke. No stroke, but after all the tests were done my doctor came in to tell me about TM. I was fortunate because he is well-known as one of the best neurosurgeons in the Pittsburgh, PA area. I haven't had a lot of mobility issues until this summer. Like you I can get around the house OK but I do use a cane in public. My balance is off enough that I tend to lose it quite often. It wouldn't do for people to think the new Baptist preacher had been nipping at the bottle! Over the last year there has been a marked decrease in feeling and function in my hands. I have a lot of trouble even picking up a pill. Eleven years ago I broke my back in an accident and have a partial spinal cord injury, so even on the best days I only have 20% nerve function from the waist down. The doctor could not rule out that the injury sort of made me more vulnerable to something like TM. One thing. I have read in these messages people talking about banding and it seems they know where on the spinal cord the damage is. What is banding? I never asked my doctor about where I am most damaged but I am not sure it would make any difference to me if I did know. I also know I am older than most (57) to be diagnosed for the first time. I've had a couple of messages from Gunny. And I read about his friend who said It's about ability, not disability. Actually, I have never thought of myself as disabled. I just have some health issues which means I must do things a bit differently than others. But so far it has not been a big deal. I am just stubborn enough to refuse to let it get to me. From: Patricia Cooley [mailto:patticoole...@gmail.com] Sent: Monday, July 26, 2010 9:17 AM To: 'Rev. Craig Crossman' Subject: RE: [TMIC] TM Info request WELCOME TO OUR TM CLUB. I AM SORRY THAT IT TOOK SOMETHING LIKE TM TO BRING YOU TO US. YOU WILL FIND A LOT OF ANSWERS TO YOUR QUESTIONS, SO DON'T BE AFRAID TO ASK ANYTHING. WE HAVE HEARD IT ALL AND MOST OF US HAVE EXPERIENCED IT ALL AT ONE TIME OR ANOTHER. FIRST, LET ME ANSWER YOUR QUESTION. A LOT OF US DO SUFFER IN THE HEAT, AND WE HAVE TO BE VERY CAREFUL NOT TO GET OVER HEATED. I AM FORTUNATE IN THAT WAY. HEAT DOESN'T BOTHER ME AT ALL, BUT THAT MAY BE I AM USUALLY COLDER THAN EVERYONE ELSE. WHEN EVERYONE ELSE IS WARM, I USUALLY REACH FOR MY SWEATER. HOW MOBILE ARE YOU. I AM ABLE TO WALK UNAIDED IN THE HOUSE, BUT WHEN I GO OUT IT IS USUALLY WITH A CANE AND/OR WALKER. I DID PURCHASE A 3 WHEEL ELECTRIC CART OVER A YEAR AGO, SO I CAN GET OUT TO FUNCTIONS THAT REQUIRE A LOT OF WALKING. IT HAS BEEN 2 YEARS THIS PAST JUNE THAT I WAS DIAGNOSED WITH TM. I HAVE COME A LONG WAY, AND THEY SAY THE FIRST 2 YEARS IS WHEN YOU WILL GET MOST OF YOUR IMPROVEMENT. I HAVE FOUND THAT EXERCISE IS VERY, VERY IMPORTANT TO KEEP UP WHAT MUSCLE STRENGTH YOU HAVE AND TO MAYBE INCREASE IT. YOUR RIGHT, MANY DOCTORS HAVE NEVER SEEN A PATIENT WITH TM. I HAVE RECENTLY MOVED SO WILL HAVE TO FIND ALL NEW DOCTORS. I AM NOT LOOKING FORWARD TO IT, BUT YOU HAVE TO DO WHAT YOU HAVE TO DO. GOOD LUCK WITH YOUR NEW DOCTOR, AND KEEP US INFORMED ON YOUR PROGRESS. GOD BLESS AND TAKE CARE. PATTI - WISCONSIN From: Rev. Craig Crossman [mailto:revcross...@gmail.com] Sent: Sunday, July 25, 2010 12:26 PM To: tmic-list@eskimo.com Subject: [TMIC] TM Info request Hello, I was very glad to find this e-list. I am new to TM having been diagnosed one year ago. We moved from PA to Kansas in April. This has been a hot summer with 20+ days straight of temps in upper 90's to low 100's, and I find I am having a greater number of symptoms than normal. Does anyone know if TM patients are adversely affected by heat? My doctor is not very familiar with TM and I won't see a neurosurgeon until September. Thanks, and God bless. Rev. Craig Crossman First Baptist Church 615 W. Webster St. Colby, KS 67701 W - (785)462-2867/ Cell - (785)443-5154 revcross...@gmail.com www.firstbaptistcolby.org
Re: [TMIC] TM Info request
Craig, I was diagnosed over 3 years ago.I was paralyzed from my shoulder blades to my toes.With steroids and massive physical therapy, I walk around the house sometimes unassisted, sometimes with my cane. I use a wheelchair for any distance walking. I was 60 when I was struck with TM.Many of the others were in their 40's, 50's, and 60's.We also have some children that have TM. My doc's have told me where, specifically, my spinal cord damage is, but, like you, I don't pay much attention to it.I just keep on persistently exercising my legs and being in rehab.Rehab is a tremendous help to me. I also see a pain-management doctor for nerve pain and pain from severe arthritis in my lower back.Nerve pain and arthritis really irritate each other! The doctors could find no reason for my getting TM.They said most people who get it have had a really bad cold or severe flu a couple of weeks before. I had neither. The banding is a tight, squeezing feeling on some part of the body parts with TM.Mine is minimal, but some of us have a lot of pain with it.Don't know why it occurs. Keep us posted on how you are doing - especially with your hands now being a problem. Great hearing from you again. Janice From: Rev. Craig Crossman Sent: Monday, July 26, 2010 11:09 AM To: 'Patricia Cooley' Cc: tmic-list@eskimo.com Subject: RE: [TMIC] TM Info request I was diagnosed almost exactly a year ago. I had gone to the ER because someone at church noticed I was dragging my left leg and thought I might be having a stroke. No stroke, but after all the tests were done my doctor came in to tell me about TM. I was fortunate because he is well-known as one of the best neurosurgeons in the Pittsburgh, PA area. I haven't had a lot of mobility issues until this summer. Like you I can get around the house OK but I do use a cane in public. My balance is off enough that I tend to lose it quite often. It wouldn't do for people to think the new Baptist preacher had been nipping at the bottle! Over the last year there has been a marked decrease in feeling and function in my hands. I have a lot of trouble even picking up a pill. Eleven years ago I broke my back in an accident and have a partial spinal cord injury, so even on the best days I only have 20% nerve function from the waist down. The doctor could not rule out that the injury sort of made me more vulnerable to something like TM. One thing. I have read in these messages people talking about banding and it seems they know where on the spinal cord the damage is. What is banding? I never asked my doctor about where I am most damaged but I am not sure it would make any difference to me if I did know. I also know I am older than most (57) to be diagnosed for the first time. I've had a couple of messages from Gunny. And I read about his friend who said It's about ability, not disability. Actually, I have never thought of myself as disabled. I just have some health issues which means I must do things a bit differently than others. But so far it has not been a big deal. I am just stubborn enough to refuse to let it get to me. From: Patricia Cooley [mailto:patticoole...@gmail.com] Sent: Monday, July 26, 2010 9:17 AM To: 'Rev. Craig Crossman' Subject: RE: [TMIC] TM Info request WELCOME TO OUR TM CLUB. I AM SORRY THAT IT TOOK SOMETHING LIKE TM TO BRING YOU TO US. YOU WILL FIND A LOT OF ANSWERS TO YOUR QUESTIONS, SO DON'T BE AFRAID TO ASK ANYTHING. WE HAVE HEARD IT ALL AND MOST OF US HAVE EXPERIENCED IT ALL AT ONE TIME OR ANOTHER. FIRST, LET ME ANSWER YOUR QUESTION. A LOT OF US DO SUFFER IN THE HEAT, AND WE HAVE TO BE VERY CAREFUL NOT TO GET OVER HEATED. I AM FORTUNATE IN THAT WAY. HEAT DOESN'T BOTHER ME AT ALL, BUT THAT MAY BE I AM USUALLY COLDER THAN EVERYONE ELSE. WHEN EVERYONE ELSE IS WARM, I USUALLY REACH FOR MY SWEATER. HOW MOBILE ARE YOU. I AM ABLE TO WALK UNAIDED IN THE HOUSE, BUT WHEN I GO OUT IT IS USUALLY WITH A CANE AND/OR WALKER. I DID PURCHASE A 3 WHEEL ELECTRIC CART OVER A YEAR AGO, SO I CAN GET OUT TO FUNCTIONS THAT REQUIRE A LOT OF WALKING. IT HAS BEEN 2 YEARS THIS PAST JUNE THAT I WAS DIAGNOSED WITH TM. I HAVE COME A LONG WAY, AND THEY SAY THE FIRST 2 YEARS IS WHEN YOU WILL GET MOST OF YOUR IMPROVEMENT. I HAVE FOUND THAT EXERCISE IS VERY, VERY IMPORTANT TO KEEP UP WHAT MUSCLE STRENGTH YOU HAVE AND TO MAYBE INCREASE IT. YOUR RIGHT, MANY DOCTORS HAVE NEVER SEEN A PATIENT WITH TM. I HAVE RECENTLY MOVED SO WILL HAVE TO FIND ALL NEW DOCTORS. I AM NOT LOOKING FORWARD TO IT, BUT YOU HAVE TO DO WHAT YOU HAVE TO DO. GOOD LUCK WITH YOUR NEW DOCTOR, AND KEEP US INFORMED ON YOUR PROGRESS. GOD BLESS AND TAKE CARE. PATTI - WISCONSIN From: Rev. Craig Crossman [mailto:revcross...@gmail.com] Sent: Sunday, July 25, 2010 12:26 PM To: tmic-list@eskimo.com Subject: [TMIC] TM
Re: [TMIC] TM Info request
I was Diagnosed a little over 3 years ago and like you did not lose mobility. my scar is at C4-C5 and I suffered hand weakness for almost 2 years, I'm a chair caner so I have worked my way past it but my over all physical strength is much reduced. I have central nerve pain from the chest down and a sensation called Lhermittes sign I shock myself whenever I tip my head down, thats on top of the feeling of electric current buzzing through my body 24/7 I don't have banding. this is very different from most TM sufferers but I have found 2 others like me (one lives in India) my balance is poor but I do okay without a cane these days (it took 2 years) I need some light to stay upright. In total dark I can't tell which way is up. I am sole in the care of my family DR. in my case this works out fine she has read up on the disease and writes my prescriptions based on what I've found others taking here. sorry you've had the need to find us but this is your best resource for help with coping with TM Mindy King (a PK) we4king...@verizon.net On Jul 26, 2010, at 12:09 PM, Rev. Craig Crossman wrote: I was diagnosed almost exactly a year ago. I had gone to the ER because someone at church noticed I was dragging my left leg and thought I might be having a stroke. No stroke, but after all the tests were done my doctor came in to tell me about TM. I was fortunate because he is well-known as one of the best neurosurgeons in the Pittsburgh, PA area. I haven’t had a lot of mobility issues until this summer. Like you I can get around the house OK but I do use a cane in public. My balance is off enough that I tend to lose it quite often. It wouldn’t do for people to think the new Baptist preacher had been nipping at the bottle! Over the last year there has been a marked decrease in feeling and function in my hands. I have a lot of trouble even picking up a pill. Eleven years ago I broke my back in an accident and have a partial spinal cord injury, so even on the best days I only have 20% nerve function from the waist down. The doctor could not rule out that the injury sort of made me more vulnerable to something like TM. One thing… I have read in these messages people talking about “banding” and it seems they know where on the spinal cord the damage is. What is banding? I never asked my doctor about where I am most damaged but I am not sure it would make any difference to me if I did know. I also know I am older than most (57) to be diagnosed for the first time. I’ve had a couple of messages from Gunny. And I read about his friend who said “It’s about ability, not disability.” Actually, I have never thought of myself as disabled. I just have some health issues which means I must do things a bit differently than others. But so far it has not been a big deal. I am just stubborn enough to refuse to let it get to me. From: Patricia Cooley [mailto:patticoole...@gmail.com] Sent: Monday, July 26, 2010 9:17 AM To: 'Rev. Craig Crossman' Subject: RE: [TMIC] TM Info request WELCOME TO OUR TM CLUB. I AM SORRY THAT IT TOOK SOMETHING LIKE TM TO BRING YOU TO US. YOU WILL FIND A LOT OF ANSWERS TO YOUR QUESTIONS, SO DON’T BE AFRAID TO ASK ANYTHING. WE HAVE HEARD IT ALL AND MOST OF US HAVE EXPERIENCED IT ALL AT ONE TIME OR ANOTHER. FIRST, LET ME ANSWER YOUR QUESTION. A LOT OF US DO SUFFER IN THE HEAT, AND WE HAVE TO BE VERY CAREFUL NOT TO GET OVER HEATED. I AM FORTUNATE IN THAT WAY. HEAT DOESN’T BOTHER ME AT ALL, BUT THAT MAY BE I AM USUALLY COLDER THAN EVERYONE ELSE. WHEN EVERYONE ELSE IS WARM, I USUALLY REACH FOR MY SWEATER. HOW MOBILE ARE YOU. I AM ABLE TO WALK UNAIDED IN THE HOUSE, BUT WHEN I GO OUT IT IS USUALLY WITH A CANE AND/OR WALKER. I DID PURCHASE A 3 WHEEL ELECTRIC CART OVER A YEAR AGO, SO I CAN GET OUT TO FUNCTIONS THAT REQUIRE A LOT OF WALKING. IT HAS BEEN 2 YEARS THIS PAST JUNE THAT I WAS DIAGNOSED WITH TM. I HAVE COME A LONG WAY, AND THEY SAY THE FIRST 2 YEARS IS WHEN YOU WILL GET MOST OF YOUR IMPROVEMENT. I HAVE FOUND THAT EXERCISE IS VERY, VERY IMPORTANT TO KEEP UP WHAT MUSCLE STRENGTH YOU HAVE AND TO MAYBE INCREASE IT. YOUR RIGHT, MANY DOCTORS HAVE NEVER SEEN A PATIENT WITH TM. I HAVE RECENTLY MOVED SO WILL HAVE TO FIND ALL NEW DOCTORS. I AM NOT LOOKING FORWARD TO IT, BUT YOU HAVE TO DO WHAT YOU HAVE TO DO. GOOD LUCK WITH YOUR NEW DOCTOR, AND KEEP US INFORMED ON YOUR PROGRESS. GOD BLESS AND TAKE CARE. PATTI - WISCONSIN From: Rev. Craig Crossman [mailto:revcross...@gmail.com] Sent: Sunday, July 25, 2010 12:26 PM To: tmic-list@eskimo.com Subject: [TMIC] TM Info request Hello, I was very glad to find this e-list. I am “new” to TM having been diagnosed one year ago. We moved from PA to Kansas in April. This has been a hot summer with 20+ days straight of temps in upper 90’s to low 100’s, and I find I am
Re: [TMIC] TM Info request
Hey Craig, Please know that I've got several years on you.I don't want you to think you get a prize for age! -:) janh P.S. I, too, was struck at age 57...that was 14½ years ago. From: Rev. Craig Crossman revcross...@gmail.com To: Patricia Cooley patticoole...@gmail.com Cc: tmic-list@eskimo.com Sent: Mon, July 26, 2010 11:09:43 AM Subject: RE: [TMIC] TM Info request I was diagnosed almost exactly a year ago. I had gone to the ER because someone at church noticed I was dragging my left leg and thought I might be having a stroke. No stroke, but after all the tests were done my doctor came in to tell me about TM. I was fortunate because he is well-known as one of the best neurosurgeons in the Pittsburgh, PA area. I haven’t had a lot of mobility issues until this summer. Like you I can get around the house OK but I do use a cane in public. My balance is off enough that I tend to lose it quite often. It wouldn’t do for people to think the new Baptist preacher had been nipping at the bottle! Over the last year there has been a marked decrease in feeling and function in my hands. I have a lot of trouble even picking up a pill. Eleven years ago I broke my back in an accident and have a partial spinal cord injury, so even on the best days I only have 20% nerve function from the waist down. The doctor could not rule out that the injury sort of made me more vulnerable to something like TM. One thing… I have read in these messages people talking about “banding” and it seems they know where on the spinal cord the damage is. What is banding? I never asked my doctor about where I am most damaged but I am not sure it would make any difference to me if I did know. I also know I am older than most (57) to be diagnosed for the first time. I’ve had a couple of messages from Gunny. And I read about his friend who said “It’s about ability, not disability.” Actually, I have never thought of myself as disabled. I just have some health issues which means I must do things a bit differently than others. But so far it has not been a big deal. I am just stubborn enough to refuse to let it get to me. From:Patricia Cooley [mailto:patticoole...@gmail.com] Sent: Monday, July 26, 2010 9:17 AM To: 'Rev. Craig Crossman' Subject: RE: [TMIC] TM Info request WELCOME TO OUR TM CLUB. I AM SORRY THAT IT TOOK SOMETHING LIKE TM TO BRING YOU TO US. YOU WILL FIND A LOT OF ANSWERS TO YOUR QUESTIONS, SO DON’T BE AFRAID TO ASK ANYTHING. WE HAVE HEARD IT ALL AND MOST OF US HAVE EXPERIENCED IT ALL AT ONE TIME OR ANOTHER. FIRST, LET ME ANSWER YOUR QUESTION. A LOT OF US DO SUFFER IN THE HEAT, AND WE HAVE TO BE VERY CAREFUL NOT TO GET OVER HEATED. I AM FORTUNATE IN THAT WAY. HEAT DOESN’T BOTHER ME AT ALL, BUT THAT MAY BE I AM USUALLY COLDER THAN EVERYONE ELSE. WHEN EVERYONE ELSE IS WARM, I USUALLY REACH FOR MY SWEATER. HOW MOBILE ARE YOU. I AM ABLE TO WALK UNAIDED IN THE HOUSE, BUT WHEN I GO OUT IT IS USUALLY WITH A CANE AND/OR WALKER. I DID PURCHASE A 3 WHEEL ELECTRIC CART OVER A YEAR AGO, SO I CAN GET OUT TO FUNCTIONS THAT REQUIRE A LOT OF WALKING. IT HAS BEEN 2 YEARS THIS PAST JUNE THAT I WAS DIAGNOSED WITH TM. I HAVE COME A LONG WAY, AND THEY SAY THE FIRST 2 YEARS IS WHEN YOU WILL GET MOST OF YOUR IMPROVEMENT. I HAVE FOUND THAT EXERCISE IS VERY, VERY IMPORTANT TO KEEP UP WHAT MUSCLE STRENGTH YOU HAVE AND TO MAYBE INCREASE IT. YOUR RIGHT, MANY DOCTORS HAVE NEVER SEEN A PATIENT WITH TM. I HAVE RECENTLY MOVED SO WILL HAVE TO FIND ALL NEW DOCTORS. I AM NOT LOOKING FORWARD TO IT, BUT YOU HAVE TO DO WHAT YOU HAVE TO DO. GOOD LUCK WITH YOUR NEW DOCTOR, AND KEEP US INFORMED ON YOUR PROGRESS. GOD BLESS AND TAKE CARE. PATTI - WISCONSIN From:Rev. Craig Crossman [mailto:revcross...@gmail.com] Sent: Sunday, July 25, 2010 12:26 PM To: tmic-list@eskimo.com Subject: [TMIC] TM Info request Hello, I was very glad to find this e-list. I am “new” to TM having been diagnosed one year ago. We moved from PA to Kansas in April. This has been a hot summer with 20+ days straight of temps in upper 90’s to low 100’s, and I find I am having a greater number of symptoms than normal. Does anyone know if TM patients are adversely affected by heat? My doctor is not very familiar with TM and I won’t see a neurosurgeon until September. Thanks, and God bless. Rev. Craig Crossman First Baptist Church 615 W. Webster St. Colby, KS 67701 W - (785)462-2867/ Cell - (785)443-5154 revcross...@gmail.com www.firstbaptistcolby.org
RE: [TMIC] TM Info request
Several Lumbar punctures/spinal taps assessment of my fluid and detection of increased white cells and MRIs led to my diagnosis. What I presented was paralysis. And they assessed the disruption to occur at a particular place along my spine. What were your tests? Mine also included various electric shock things-- some kind of conductive analysis, and CAT scans. Akua I was diagnosed almost exactly a year ago. I had gone to the ER because someone at church noticed I was dragging my left leg and thought I might be having a stroke. No stroke, but after all the tests were done my doctor came in to tell me about TM. I was fortunate because he is well-known as one of the best neurosurgeons in the Pittsburgh, PA area. I haven't had a lot of mobility issues until this summer. Like you I can get around the house OK but I do use a cane in public. My balance is off enough that I tend to lose it quite often. It wouldn't do for people to think the new Baptist preacher had been nipping at the bottle! Over the last year there has been a marked decrease in feeling and function in my hands. I have a lot of trouble even picking up a pill. Eleven years ago I broke my back in an accident and have a partial spinal cord injury, so even on the best days I only have 20% nerve function from the waist down. The doctor could not rule out that the injury sort of made me more vulnerable to something like TM. One thing I have read in these messages people talking about banding and it seems they know where on the spinal cord the damage is. What is banding? I never asked my doctor about where I am most damaged but I am not sure it would make any difference to me if I did know. I also know I am older than most (57) to be diagnosed for the first time. I've had a couple of messages from Gunny. And I read about his friend who said It's about ability, not disability. Actually, I have never thought of myself as disabled. I just have some health issues which means I must do things a bit differently than others. But so far it has not been a big deal. I am just stubborn enough to refuse to let it get to me. Rev. Craig Crossman --
Re: [TMIC] TM Info request
Betty, thanks for chiming in and letting us get to know you and your situation. I wanted to tell you that some of us have had improvements several years after the 2-year mark.So never give up. Your symptoms - fatigue, skin sensations/not, tingly feelings under the skin, pain, banding - are what we are all dealing with, not to mention the balance and walking problems, for those who can walk. That is what is so great about this website. You can talk, vent, recommend, enlighten, etc.We can all learn/help from each other, whether it is emotional help or medical help. I am glad you are doing as well as you are and, please, keep emailing us. We can always use input. Janice From: Beeclark Sent: Monday, July 26, 2010 5:59 PM To: tmic-list@eskimo.com Subject: Re: [TMIC] TM Info request Hi Craig. My name is Betty, I'm 57 years old live in northern California. My journey into TM started the morning after Easter in April, 2006 (no previous symptoms or illness). I woke w/ a numb right arm. I also had intense pain around the back of my neck between my shoulder blades. Then I noticed both big toes felt numb. After the Dr. did an EKG, X-ray blood test, I went home to wait for results. That evening, both legs, besides feeling numb, started spasming got so bad, my husband went to an all-night pharmacy to get a Rx to get me through the night. At 2:00 the next afternoon my GP finally said to go to Emergency. After an hour-and-a-half MRI Spinal Tap, the on-call neurologist said I had TM, fortunately at C7 only. However, paralyzed by this time from the chest down w/no hand function, I spent 4 days in the hospital on Solumedrol treatments, which arrested the virus, then was x'ferred to a local recovery center for 4 wks of intensive physical occupational therapy where I regained most of the use of my legs arms/hands. My right leg is nearly completely recovered. I still have a hitch in my left leg went to PT 2X/week. I can walk – though somewhat unsteadily due to balance issues w/the left leg/foot (also intensified by the use of Neurontin/Gabapentin). I've been left w/ a kind of surface skin numbness... I have gross touch sensation (I can feel it if I rub my right leg or upper torso) h owever, if I'm scratched w/ something sharp, I don't feel it. My left leg (the bad one) has much less sensation. Ever since, I've spent every week 2X/wk w/a hand specialist because my hand function never returned completely. However small, I have gained progress over time in strength function thru the use of splints various exercises, as well as two surgeries to re-route minor tendons to function for the damaged ones. I am now doing my own home-therapy as all that's left is to strengthen teach these minor tendons to take over. Craig, since it sounds like you are experiencing the same hand “dis-function” as I, you may want to consult w/ your Dr. about a tendon transfer for your hand(s). If it looks like something that might help you your physician would like to consult w/ my surgeon, his name is Dr. Michael Grafe at Redwood Orthopaedic Surgery Associates, 208 Concourse Blvd., Suite 1, Santa Rosa, CA, (707) 544-3400. In addition to my leg/hand issues, I also have no temperature sensation from the bust down. At times of stress, extreme cold or if I go beyond my pain-med cycle, I also get the intense banding around my torso. It is exacerbated by a hyper-sensitivity to certain types of fabrics. I can no longer stand to wear polyester-type clothing against my skin. The smooth satiny or polyester knits make my skin feel like it's crawling or burning when I move in them. I now try to wear only natural fibers, although some cotton-polyester blends are okay for a while – just not all day. For nerve pain management, I am on a 6-hr. med cycle of (3) 300mg Neurontin (generic=Gabapentin) (1) Hydrocodone-APAP 7.5-325 (generic=Norco). By taking them 4X/day (every 6 hrs.), I keep a more steady dosage in my body. (I was 1st prescribed 3X/day - morning, afternoon before bedtime; but the stretch in between was too long by the time I woke each morning, I could barely get myself out of bed to walk to the bathroom. I told my GP I needed to shorten the time in between by taking an additional dose. She my Neurologist both agreed. By the end of each cycle, I'm more than ready to take the next dose, but at least I am able to be out about do minor housework. I'm not so far gone I can't function. Don't know if I'll ever be able to stop taking the meds, but if not, so be it. If they help me function, that's what it takes. While I'm thankful for as much as I've recovered, the loss of hand function frequent physical fatigue forced me to quit my job of 31 yrs from HP/Agilent Technologies. Even though I'm mobile can drive myself anywhere, after trying to go back to work part-time after a year of therapy, I found myself way too tired
[TMIC] TM Info request
Hello, I was very glad to find this e-list. I am new to TM having been diagnosed one year ago. We moved from PA to Kansas in April. This has been a hot summer with 20+ days straight of temps in upper 90's to low 100's, and I find I am having a greater number of symptoms than normal. Does anyone know if TM patients are adversely affected by heat? My doctor is not very familiar with TM and I won't see a neurosurgeon until September. Thanks, and God bless. Rev. Craig Crossman First Baptist Church 615 W. Webster St. Colby, KS 67701 W - (785)462-2867/ Cell - (785)443-5154 revcross...@gmail.com www.firstbaptistcolby.org
RE: [TMIC] TM Info request
Welcome to our group, sorry you had to find us! Heat will affect some of us, won't affect others. Cold affects some, not others. TM should stand for Totally Miscellaneous because all symptoms vary, except for usually the banding and the pain. Janet Injured at T4 - T5 From: Rev. Craig Crossman [mailto:revcross...@gmail.com] Sent: July 25, 2010 10:26 AM To: tmic-list@eskimo.com Subject: [TMIC] TM Info request Hello, I was very glad to find this e-list. I am new to TM having been diagnosed one year ago. We moved from PA to Kansas in April. This has been a hot summer with 20+ days straight of temps in upper 90's to low 100's, and I find I am having a greater number of symptoms than normal. Does anyone know if TM patients are adversely affected by heat? My doctor is not very familiar with TM and I won't see a neurosurgeon until September. Thanks, and God bless. Rev. Craig Crossman First Baptist Church 615 W. Webster St. Colby, KS 67701 W - (785)462-2867/ Cell - (785)443-5154 revcross...@gmail.com www.firstbaptistcolby.org
RE: [TMIC] TM Info request
My nero told me that with any spinal cord injury (TM is classified as such) have a hard time regulating there body tempature. You have al the support you need on this site, no question if off limits and we all share in our lifes triumphs and troubles Kim TM- Oct 04 T-10 --- On Sun, 7/25/10, Janet Dunn j.d...@shaw.ca wrote: From: Janet Dunn j.d...@shaw.ca Subject: RE: [TMIC] TM Info request To: 'Rev. Craig Crossman' revcross...@gmail.com, tmic-list@eskimo.com Date: Sunday, July 25, 2010, 1:35 PM Welcome to our group, sorry you had to find us! Heat will affect some of us, won’t affect others. Cold affects some, not others. TM should stand for Totally Miscellaneous because all symptoms vary, except for usually the banding and the pain. Janet Injured at T4 – T5 From: Rev. Craig Crossman [mailto:revcross...@gmail.com] Sent: July 25, 2010 10:26 AM To: tmic-list@eskimo.com Subject: [TMIC] TM Info request Hello, I was very glad to find this e-list. I am “new” to TM having been diagnosed one year ago. We moved from PA to Kansas in April. This has been a hot summer with 20+ days straight of temps in upper 90’s to low 100’s, and I find I am having a greater number of symptoms than normal. Does anyone know if TM patients are adversely affected by heat? My doctor is not very familiar with TM and I won’t see a neurosurgeon until September. Thanks, and God bless. Rev. Craig Crossman First Baptist Church 615 W. Webster St. Colby, KS 67701 W - (785)462-2867/ Cell - (785)443-5154 revcross...@gmail.com www.firstbaptistcolby.org
Re: [TMIC] TM Info request
Welcome Craig, The end of this week will be my tenth anniversary. A bit about myself, I practiced family medicine for 25 years, then retired- the first mistake- then had too much fun, then was stung by a mosquito, Contracted a virus which mimicked (sp?) the covering of my spinal cord nerves. So my body attacked my spinal cord. I now have a small pea sized volume of demyelination at the 6th cervical region, on the right side. I walk poorly, have constant pain from my upper chest to the bottoms of my feet. My symptoms are made worse by change in barometric pressure, heat, cold, stress (Meditation/prayer helps enormously)... I could go on and on...under the pain is a numb tingly feeling. I take a lot of lot of Meds: Nortriptyline, Phenobarbital ( I know Marilyn Monroe killed herself with this, but I'm not suicidal except on Monday evening [ just kidding]), Marijuana spray obtained by Rx from a pain Dr. in Montreal, Vitamin D and Dextromethorphan. If you need help feel free to email Frank
Re: [TMIC] TM Info request
Hi! I also was so glad to be able to feel a part of this unique group of wonderful people.I was feeling so isolated with having a disease so rare.While we are sorry for the reason you found us, we will give you support in every way. Many of us have the body temperature problem.I get very hot and sweaty from the shoulders up - the rest of me can feel cool to the touch. I wear a clonidine patch on my arm to help regulate my body heat, but I don't think it does a lot for me, but I wear it anyway. I am from Missouri, so we are neighbors. Just remember, as many of us have said before to other new members, there is nothing that has not been discussed among us. TM affects us in so many ways - not just our walking. At least, if you want to discuss a problem, whether physical or emotional, there will always be someone that knows exactly what you are talking about (probably most of us).No embarrassments here. We also discuss medications we are taking, etc.I wish you were seeing your neurologist sooner, but if your doctor is treating the symptoms, that is good. We are your new friends and welcome you. Janice, Missouri From: Rev. Craig Crossman Sent: Sunday, July 25, 2010 12:25 PM To: tmic-list@eskimo.com Subject: [TMIC] TM Info request Hello, I was very glad to find this e-list. I am new to TM having been diagnosed one year ago. We moved from PA to Kansas in April. This has been a hot summer with 20+ days straight of temps in upper 90's to low 100's, and I find I am having a greater number of symptoms than normal. Does anyone know if TM patients are adversely affected by heat? My doctor is not very familiar with TM and I won't see a neurosurgeon until September. Thanks, and God bless. Rev. Craig Crossman First Baptist Church 615 W. Webster St. Colby, KS 67701 W - (785)462-2867/ Cell - (785)443-5154 revcross...@gmail.com www.firstbaptistcolby.org
Re: [TMIC] TM Info request
YES with any spinal cord injury (TM is classified as such) have a hard time regulating there body temperature My left side temperature is 10 higher than my right during the summer, but 10 degrees lower than the right during the winter. They tell me when both are the same temp, I'll be dead! I wear a velvet glove on my left hand from time to time. I'm not sure it helps. Time to make dinner! Frank
Re: [TMIC] TM Info request
Craig, Welcome to the group. Like many here, we are glad you found us but wish it was under different circumstances. I have a list of websites dealing with TM, Spinal locations and info, medications, insurance and insurace problems, SSDI, etc. If you like, email me and I will send you the list. Some of the info may be helpful to share with your doctor and neuro. Each of TMers are similiar but different. I think we all experience terrible pain, mine is in my lower back, spasms, and other issues. Again WELCOME to our elite group. Prayers and thoughts for you and yours, Candy K. - Original Message - From: Rev. Craig Crossman revcross...@gmail.com To: tmic-list@eskimo.com Sent: Sunday, July 25, 2010 1:25:39 PM GMT -05:00 US/Canada Eastern Subject: [TMIC] TM Info request Hello, I was very glad to find this e-list. I am “new” to TM having been diagnosed one year ago. We moved from PA to Kansas in April. This has been a hot summer with 20+ days straight of temps in upper 90’s to low 100’s, and I find I am having a greater number of symptoms than normal. Does anyone know if TM patients are adversely affected by heat? My doctor is not very familiar with TM and I won’t see a neurosurgeon until September. Thanks, and God bless. Rev. Craig Crossman First Baptist Church 615 W. Webster St. Colby, KS 67701 W - (785)462-2867/ Cell - (785)443-5154 revcross...@gmail.com www.firstbaptistcolby.org
Re: [TMIC] TM Info request
Welcome Craig, Hope that first name basis is ok with you, cause we're family here. Sorry we had to meet this way, but you're lucky to have found this new family!! We, like no one else in your life, know what's going on with you..and that means a WHOLE bunch to all of us! No matter how you try to tell your loved ones or friends what's up, they can never fully understand, and might think you're making it up! Here, feel free to ask anything you might wonder about... as snowflakes, no two of us are alike in symptoms etc, but someone will be able to relate to one question while another can answer something else. As for your question about temperature control, the only thing my nuero told me when he let me come home was that my temp control would never return. I was a complete at the t8 level (about the bra level) and in the summer I can only sweat from t8 up...I can't stay out in heat for long, heat stroke is a threatthen in cold weather, I'm always cold above that spot..yet, my legs feel like fire at the bone level, while freezing on the outside..known here as the freeze/burning feeling. Enough of my babbling, just ask whatever is bothering you and someone will be able to help. P.S. I live in OK so I'm well aware of the heat you have in KS!! Also you must listen to your body and not overdowe all try in the beginning to be who we were before, but that isn't feasible..so rest as needed, that's your new reality. I'm not saying you'll not get some improvement.at 14+ I still get some 'new' feeling. janh Stillwater, OK From: Rev. Craig Crossman revcross...@gmail.com To: tmic-list@eskimo.com Sent: Sun, July 25, 2010 12:25:39 PM Subject: [TMIC] TM Info request Hello, I was very glad to find this e-list. I am “new” to TM having been diagnosed one year ago. We moved from PA to Kansas in April. This has been a hot summer with 20+ days straight of temps in upper 90’s to low 100’s, and I find I am having a greater number of symptoms than normal. Does anyone know if TM patients are adversely affected by heat? My doctor is not very familiar with TM and I won’t see a neurosurgeon until September. Thanks, and God bless. Rev. Craig Crossman First Baptist Church 615 W. Webster St. Colby, KS 67701 W - (785)462-2867/ Cell - (785)443-5154 revcross...@gmail.com www.firstbaptistcolby.org
RE: [TMIC] TM Info request
Actually, Craig; I know some here might object, but when persons ask, I just say MS, multiple sclerosis, because many of the symptoms are the same, although the progression is not. The reason is that when you say transverse myelitis, they go, Oh, what's that? and they sort of move away in case it's infectious. So, I say, MS and they say Oh, right. Sorry to hear about it. Much better. Dalton _ From: Jan Hargrove [mailto:jmh1...@sbcglobal.net] Sent: Sunday, July 25, 2010 5:44 PM To: Rev. Craig Crossman; tmic-list@eskimo.com Subject: Re: [TMIC] TM Info request Welcome Craig, Hope that first name basis is ok with you, cause we're family here. Sorry we had to meet this way, but you're lucky to have found this new family!! We, like no one else in your life, know what's going on with you..and that means a WHOLE bunch to all of us! No matter how you try to tell your loved ones or friends what's up, they can never fully understand, and might think you're making it up! Here, feel free to ask anything you might wonder about... as snowflakes, no two of us are alike in symptoms etc, but someone will be able to relate to one question while another can answer something else. As for your question about temperature control, the only thing my nuero told me when he let me come home was that my temp control would never return. I was a complete at the t8 level (about the bra level) and in the summer I can only sweat from t8 up...I can't stay out in heat for long, heat stroke is a threatthen in cold weather, I'm always cold above that spot..yet, my legs feel like fire at the bone level, while freezing on the outside..known here as the freeze/burning feeling. Enough of my babbling, just ask whatever is bothering you and someone will be able to help. P.S. I live in OK so I'm well aware of the heat you have in KS!! Also you must listen to your body and not overdowe all try in the beginning to be who we were before, but that isn't feasible..so rest as needed, that's your new reality. I'm not saying you'll not get some improvement.at 14+ I still get some 'new' feeling. janh Stillwater, OK _ From: Rev. Craig Crossman revcross...@gmail.com To: tmic-list@eskimo.com Sent: Sun, July 25, 2010 12:25:39 PM Subject: [TMIC] TM Info request Hello, I was very glad to find this e-list. I am new to TM having been diagnosed one year ago. We moved from PA to Kansas in April. This has been a hot summer with 20+ days straight of temps in upper 90's to low 100's, and I find I am having a greater number of symptoms than normal. Does anyone know if TM patients are adversely affected by heat? My doctor is not very familiar with TM and I won't see a neurosurgeon until September. Thanks, and God bless. Rev. Craig Crossman First Baptist Church 615 W. Webster St. Colby, KS 67701 W - (785)462-2867/ Cell - (785)443-5154 revcross...@gmail.com www.firstbaptistcolby.org http://www.firstbaptistcolby.org/
Re: [TMIC] TM Info request
Craig Another hearty welcome to the TM family. Yes. the higher temperatures increase my TM symptoms. Everything intensifies. The burning pain feels hotter, the banding feels tighter, my bad leg feels heavier and I stumble more. Oddly, the clonus in my hand is more pronounced and my fingers tingle. I get relief from my symptoms when the temperature drops to my favorite 72 to 82 degrees. This is my 7th summer with TM and I prefer these symptoms over the bone chilling pains that the cold weather brings. No complaints. Just the facts. Blessings to you Patti - Michigan Rev. Craig Crossman revcross...@gmail.com wrote: Hello, I was very glad to find this e-list. I am new to TM having been diagnosed one year ago. We moved from PA to Kansas in April. This has been a hot summer with 20+ days straight of temps in upper 90's to low 100's, and I find I am having a greater number of symptoms than normal. Does anyone know if TM patients are adversely affected by heat? My doctor is not very familiar with TM and I won't see a neurosurgeon until September. Thanks, and God bless. Rev. Craig Crossman First Baptist Church 615 W. Webster St. Colby, KS 67701 W - (785)462-2867/ Cell - (785)443-5154 revcross...@gmail.com www.firstbaptistcolby.org
Re: [TMIC] TM
Hi Janice, I live in Garfild Hts Ohio, a suburb 7 minutes from Cleveland. There is a landfill about 2 miles from my house that they began excavating around 2003 and the smell from it was awful. My neighbor whose daughter was raised here and is about 10 years younger than me has MS...Hmmm, makes you wonder if that could be something. Rita Janice Nichols jan...@centurytel.net wrote: After the awful news Janet Dunn has given us, I am wondering if where we live in the US has any relevance. I realize that there are those in our group that are from other countries and I am asking them along with our US citizens to just send me your name and the city and state you were living in when TM attacked you. I hope you don't mind my asking you to do this, but I think it would be very interesting if we found a certain area that was heavy with TM or very light with TM. Thank you, Janice
Re: [TMIC] TM
Thanks for your response.It will be interesting to see what others say. Janice From: CANDIS KALLEY Sent: Thursday, May 06, 2010 11:35 PM To: TMIC-LIST Subject: Re: [TMIC] TM I don't think that where we lived when TM struck is the only underlying factor. I was watching CNN and the doctor, Dr. Grupa?, said that they have studied the cord blood of newborns and they have found that the cord blood contained over 200 chemicals, not body chemials but harmful chemicals - contaminated newborns is what they called the newborns. The Dr. also said that there are thousands of chemicals that are in our food, air, clothing, cleaning supplies, etc. that have NOT been studied to make sure that they are not harmful. A Congressman has submitted a bill that will not allow any chemical to be used until the chemical is proven not harmful - as it stands now, a chemical is put into use and used until it is proven to be harmful! So we are all guinea pigs for the industries. For myself I believe that I had the bad genes for my auoimmune sstem but also just 75 days before TM struc me, I had a botched surgery then a follow-up successful surgery 30 days later. In between the surgeries, I had an allergy reaction to the meds that they gave me. After the successful sugery, I went back to work early - due to deadlines which resulted in stress! Added to that were the holidays stress - Thanksgiving and Christmas. I think another factor was that the hospital where I had the botched successful surgery was under major remodeling - the surgery rooms where right next to a major area being remodeled. I grew up in Indianapolis, IN. I can rememer the different smells in the air - just to name a couple, a creasol pole coating factory, a couple of slaughter houses, meat processing, medical processing, bakeries (Wonder bread and others). I lived there for over 20 years. My daughter was born there and as a baby she had so many attacks of broncitis (sp?) BUT as soon as we moved here in SW FL when she was 2, the attacks stopped. Life is short! Break the rules! Forgive quickly! Kiss slowly! Love truly, Laugh uncontrollably . And never regret anything that made you smile. Prayers and thoughts for you and yours, Candy K. - Original Message - From: Janice Nichols jan...@centurytel.net To: tmic-list@eskimo.com Sent: Thursday, May 6, 2010 10:55:00 PM GMT -05:00 US/Canada Eastern Subject: [TMIC] TM After the awful news Janet Dunn has given us, I am wondering if where we live in the US has any relevance. I realize that there are those in our group that are from other countries and I am asking them along with our US citizens to just send me your name and the city and state you were living in when TM attacked you. I hope you don't mind my asking you to do this, but I think it would be very interesting if we found a certain area that was heavy with TM or very light with TM. Thank you, Janice
Re: [TMIC] TM
We were told at the 1999 TM Symposium that the majority of tm patients were in the north.those of us in the southern U.S. were just lucky!! (so to speak) janh Stillwater, OK From: Janice Nichols jan...@centurytel.net To: tmic-list@eskimo.com Sent: Thu, May 6, 2010 9:55:00 PM Subject: [TMIC] TM After the awful news Janet Dunn has given us, I am wondering if where we live in the US has any relevance. I realize that there are those in our group that are from other countries and I am asking them along with our US citizens to just send me your name and the city and state you were living in when TM attacked you. I hope you don't mind my asking you to do this, but I think it would be very interesting if we found a certain area that was heavy with TM or very light with TM. Thank you, Janice
Re: [TMIC] TM
Candis, I grew up in Hamilton Ontario from age 7 to 21. It was a steel town and so lots of pollution. I too wonder about the 'air' we live in while growing up. Heather in Calgary - Original Message - From: CANDIS KALLEY To: TMIC-LIST Sent: Thursday, May 06, 2010 10:35 PM Subject: Re: [TMIC] TM I don't think that where we lived when TM struck is the only underlying factor. I was watching CNN and the doctor, Dr. Grupa?, said that they have studied the cord blood of newborns and they have found that the cord blood contained over 200 chemicals, not body chemials but harmful chemicals - contaminated newborns is what they called the newborns. The Dr. also said that there are thousands of chemicals that are in our food, air, clothing, cleaning supplies, etc. that have NOT been studied to make sure that they are not harmful. A Congressman has submitted a bill that will not allow any chemical to be used until the chemical is proven not harmful - as it stands now, a chemical is put into use and used until it is proven to be harmful! So we are all guinea pigs for the industries. For myself I believe that I had the bad genes for my auoimmune sstem but also just 75 days before TM struc me, I had a botched surgery then a follow-up successful surgery 30 days later. In between the surgeries, I had an allergy reaction to the meds that they gave me. After the successful sugery, I went back to work early - due to deadlines which resulted in stress! Added to that were the holidays stress - Thanksgiving and Christmas. I think another factor was that the hospital where I had the botched successful surgery was under major remodeling - the surgery rooms where right next to a major area being remodeled. I grew up in Indianapolis, IN. I can rememer the different smells in the air - just to name a couple, a creasol pole coating factory, a couple of slaughter houses, meat processing, medical processing, bakeries (Wonder bread and others). I lived there for over 20 years. My daughter was born there and as a baby she had so many attacks of broncitis (sp?) BUT as soon as we moved here in SW FL when she was 2, the attacks stopped. Life is short! Break the rules! Forgive quickly! Kiss slowly! Love truly, Laugh uncontrollably . And never regret anything that made you smile. Prayers and thoughts for you and yours, Candy K. - Original Message - From: Janice Nichols jan...@centurytel.net To: tmic-list@eskimo.com Sent: Thursday, May 6, 2010 10:55:00 PM GMT -05:00 US/Canada Eastern Subject: [TMIC] TM After the awful news Janet Dunn has given us, I am wondering if where we live in the US has any relevance. I realize that there are those in our group that are from other countries and I am asking them along with our US citizens to just send me your name and the city and state you were living in when TM attacked you. I hope you don't mind my asking you to do this, but I think it would be very interesting if we found a certain area that was heavy with TM or very light with TM. Thank you, Janice
[TMIC] TM
After the awful news Janet Dunn has given us, I am wondering if where we live in the US has any relevance. I realize that there are those in our group that are from other countries and I am asking them along with our US citizens to just send me your name and the city and state you were living in when TM attacked you. I hope you don't mind my asking you to do this, but I think it would be very interesting if we found a certain area that was heavy with TM or very light with TM. Thank you, Janice
Re: [TMIC] TM
I don't think that where we lived when TM struck is the only underlying factor. I was watching CNN and the doctor, Dr. Grupa?, said that they have studied the cord blood of newborns and they have found that the cord blood contained over 200 chemicals, not body chemials but harmful chemicals - contaminated newborns is what they called the newborns . The Dr. also said that there are thousands of chemicals that are in our food, air, clothing, cleaning supplies, etc. that have NOT been studied to make sure that they are not harmful. A Congressman has submitted a bill that will not allow any chemical to be used until the chemical is proven not harmful - as it stands now, a chemical is put into use and used until it is proven to be harmful! So we are all guinea pigs for the industries. For myself I believe that I had the bad genes for my auoimmune sstem but also just 75 days before TM struc me, I had a botched surgery then a follow-up successful surgery 30 days later. I n between the surgeries, I had an allergy reaction to the meds that they gave me. After the successful sugery, I went back to work early - due to deadlines which resulted in stress! Added to that were the holidays stress - Thanksgiving and Christmas. I think another factor was that the hospital where I had the botched successful surgery was under major remodeling - the surgery rooms where right next to a major area being remodeled. I grew up in Indianapolis, IN. I can rememer the different smells in the air - just to name a couple, a creasol pole coating factory, a couple of slaughter houses, meat processing, medical processing, bakeries (Wonder bread and others). I lived there for over 20 years. My daughter was born there and as a baby she had so many attacks of broncitis (sp?) BUT as soon as we moved here in SW FL when she was 2, the attacks stopped. Life is short! Break the rules! Forgive quickly! Kiss slowly! Love truly, Laugh uncontrollably . And never regret anything that made you smile. Prayers and thoughts for you and yours, Candy K. - Original Message - From: Janice Nichols jan...@centurytel.net To: tmic-list@eskimo.com Sent: Thursday, May 6, 2010 10:55:00 PM GMT -05:00 US/Canada Eastern Subject: [TMIC] TM After the awful news Janet Dunn has given us, I am wondering if where we live in the US has any relevance. I realize that there are those in our group that are from other countries and I am asking them along with our US citizens to just send me your name and the city and state you were living in when TM attacked you. I hope you don't mind my asking you to do this, but I think it would be very interesting if we found a certain area that was heavy with TM or very light with TM. Thank you, Janice
[TMIC] Tm SUPPORT GROUP MEETING
As of today we have 9 members plus family members who have stated they will attend. If you have not yet responded please do so asap. It now appears we will have enough people attending to make this meeting worthwhile. Hopefully I will still hear from some latecomers! All the best! Rob in New Jersey PS: the meeting is in Rahway on May 16th between 1-4
Re: [TMIC] Tm SUPPORT GROUP MEETING
HI I am Carol in Michigan, Imlay City to be exact. I sure hope you get lots of people to come to your meeting. It was such a pleasure for Jim and I to get to meet and share with other TMers. Of course my feelings are divided as my Jim went to be with God last September and that is a much better place for him now, but I will still continue to go to the Michigan meetings as long as they invite me and I am able, because they are all family to me now. I am doing well and concentrating on my great memories. I consider myself blessed.Carol
Re: [TMIC] Tm SUPPORT GROUP MEETING
You have a great attitude which will get you through whatever comes, which has been a lot already. I really admire you. Janice, from Missouri From: cjb...@aol.com Sent: Friday, April 30, 2010 12:11 PM To: tmic-list@eskimo.com Subject: Re: [TMIC] Tm SUPPORT GROUP MEETING HI I am Carol in Michigan, Imlay City to be exact. I sure hope you get lots of people to come to your meeting. It was such a pleasure for Jim and I to get to meet and share with other TMers. Of course my feelings are divided as my Jim went to be with God last September and that is a much better place for him now, but I will still continue to go to the Michigan meetings as long as they invite me and I am able, because they are all family to me now. I am doing well and concentrating on my great memories. I consider myself blessed. Carol
[TMIC] TM and Me
I'm so glad to have found this site. I was diagnosed with TM in October 2008. My battle continues. Jeron o'Hara Rampersad Jeron, Welcome to the tm family!! Sorry you have to be here, but it's the best place to learn more about what's going on with your body!! I can relate to how you felt when you found this site!! I cried when I realized there were others who REALLY knew what was going on with me. That was 14 years ago at the end of April and I still learn things here, altho' I don't write much anymore. Feel free to ask any question you might have and someone will relate to what you need to know. If you haven't already, go to TMA website, sign up (it's free), and you'll then get the Newsletter and a membership list. Again, welcome!! janh
[TMIC] TM and Me Terry Parker
Terry had spinal surgery Monday to remove a large calcified disk that was compressing his cord @ T12, (not related to his TM). However, the Neurosurgeon feels that it MAY increase his mobility! He came home from the hospital last night and is doing fairly well, although he certainly feels some pain. This morning when he got up he said that the pain he had been feeling for several months that radiates from his hip down to his leg is gone! We are so very hopeful. St. Paddy's Day marks Terry's 10 year un-birthday of TM. Many of you 'oldtimers' know, that he had no improvement the first 1.5 years, but very, very gradually over the years he improved to where he can now take some steps and is completely independent, with the exception of wheelchair dependent. He is still on Gabapentin, Baclofen and 7 mg of prednisone. Thanks to those of you that sent good wishes, prayers love! Sandy Parker
Re: [TMIC] TM and Me Terry Parker
I AM S HAPPY FOR YOU. HOPE THE PAIN IS GONE FOR GOOD. JANE/SPLENDORA TX
[TMIC] TM and Me
I'm so glad to have found this site. I was diagnosed with TM in October 2008. My battle continues. Jeron o'Hara Rampersad _ Hotmail: Trusted email with Microsoft’s powerful SPAM protection. https://signup.live.com/signup.aspx?id=60969
Re: [TMIC] TM and Me
Well, we are really happy to have a new member - except for the fact that you have TM to get here! Tell us your story of your attack of TM and how you are doing, if you don't mind. We have all done the same and know each other's stories. It seems that we all have many similarities and yet we are all left at different levels with TM. Please do not be shy about jumping in with any of the topics that come up.We all are just honest in our opinions and as you will be told over and over, there is nothing that has not been discussed or asked in this group. We are very open and probably have many of the same problems that you do. Anyway, we are really glad you found us and we hope we can help in some way. It will help take away some of the isolation feelings that many of us had in having such a rare disease. Hope to hear from you. Janice, from Missouri From: j ra Sent: Tuesday, March 09, 2010 2:44 PM To: tmic-list@eskimo.com Subject: [TMIC] TM and Me I'm so glad to have found this site. I was diagnosed with TM in October 2008. My battle continues. Jeron o'Hara Rampersad Hotmail: Trusted email with Microsoft’s powerful SPAM protection. Sign up now.
Re: [TMIC] TM and cooking
We also grill a lot, and our son Daniel and his family live with us right now and when he isn't in class, working or having too much homework, he is great at helping with cooking or grilling. I try to get him to take over 2 nights or more a week, but getting increasingly more difficult with his new schedule. He makes such a huge deal out of meat prep and cooking though that he can hardly manage to get a whole meal done. Mind you he's a great cook, nearly chef quality in some things that he prepares. I don't grill much myself since we have a 4 foot stainless steel grill and raising and then lowering the lid is very cumbersome for me and I get tired of asking for help. It's wonderful though as we can cook a party load of meat and tons of corn at the same time. Daniel has smoked a salmon that he caught on it too. Both of our boys are very good cooks, much better than their wives, so they really don't do much cooking since the guys do it much better. And the boys take over when there's a party or family function going on, and that works for all of us. I make a couple of dishes and they take care of the rest. I taught them young, that if they were going to want to eat well, they needed to be able to cook well. It's much easier on the wallet and healthier to know what's in your food. Living in California we can grill year round, and even do it sometimes in the rain, and long as it's not pouring too hard. But some things you just need to cook inside the house. Hugs, Barbara A in Auburn CA -Original Message- From: bobby jim elbobber...@earthlink.net To: rj_ran...@yahoo.com; tmic-list@eskimo.com; Barbara Alma balmat...@aol.com Sent: Sun, Feb 14, 2010 5:54 pm Subject: Re: [TMIC] TM and Pilates Me missus too, being the foodie that she is, sometimes cooks to exhaustion, specially when it's our turn to host the semi-monthly birthday(s) party, those being where we bunch up several bee-dayze in close proximity and have one party for them all. Plus there's also Thnxgvng and Xmas; luckily, her immediate family is only about from 10 to 12 (some can't come, etc..), so her turn to host is every three or four. My family is scattered all over 2 continents so I see them every now and then. Happy Valentine's Day to all y'all. BobbyJim From: Barbara Alma To: rj_ran...@yahoo.com ; tmic-list@eskimo.com Sent: Sunday, February 14, 2010 6:20 Subject: Re: [TMIC] TM and Pilates Hi Randy, Yes, I have residuals. I can walk, but not well without aids. When I do, I use up so much of my energy that I cannot function much after doing just a very small amount, so it's just not worth it. Around the house I use a walker with wheels for household chores like laundry and while doing my cooking prep at the kitchen table, etc. I can't walk and carry hardly anything unless it's like from one counter to another in the kitchen or if there isn't any weight to it. It just doesn't work for me. Like can't walk and chew gum, you know? It's just easier than using a cane or crutch and then going back and forth with just one thing at a time. I can load it up and carry a bunch of stuff at once. But, I really give myself a workout just trying to cook at the stove. That's a real challenge for me to stand at the stove for very long and I really miss spending more time cooking. My daughter in-law says when I start to look like a cowgirl, that's when you know that I'm in trouble and looking like I'm in danger of overdoing it. So, I do as much as I can sitting. Hugs, Barbara A in Auburn CA -Original Message- From: rj_ran...@yahoo.com To: Barbara Alma balmat...@aol.com; tmic-list@eskimo.com Sent: Sat, Feb 13, 2010 9:51 pm Subject: Re: [TMIC] TM and Pilates Barbara you helped restore some of my sanity. Do you still have residual problems? My same neuro suggested that it have been auto immunine disorder. I didn't know if he was suggesting a virus and when I asked I think that he might have thought that I just don't have enough background knowledge to understand. I know that I have been checked for a lot of pathogens and each time it was always negative. I did get eatten up by mosqiutoes in the deep woods of a national forrest 2 weeks before the tm experience set in. Sent from my Verizon Wireless BlackBerry From: Barbara Alma balmat...@aol.com Date: Sun, 14 Feb 2010 00:39:33 -0500 To: rj_ran...@yahoo.com; tmic-list@eskimo.com Subject: Re: [TMIC] TM and Pilates Hi Randy and all TMIC, I am another one who was originally told that I had TM and am now being told that I don't, and that's by the same doctor and another as well. I've never been talked to about MS though. I had only one attack, was paralyzed from waist to toes within 15 minutes, at lesion T8-10. I even went to 2 different hospitals, as I wanted a second opinion, both with a TM diagnosis. After about 3 yrs I was told by my first Neuro, who became my
Re: [TMIC] TM and cooking
That sounds wonderful! Lucky you. Janice From: Barbara Alma Sent: Monday, February 15, 2010 2:39 AM To: elbobber...@earthlink.net ; tmic-list@eskimo.com Subject: Re: [TMIC] TM and cooking We also grill a lot, and our son Daniel and his family live with us right now and when he isn't in class, working or having too much homework, he is great at helping with cooking or grilling. I try to get him to take over 2 nights or more a week, but getting increasingly more difficult with his new schedule. He makes such a huge deal out of meat prep and cooking though that he can hardly manage to get a whole meal done. Mind you he's a great cook, nearly chef quality in some things that he prepares. I don't grill much myself since we have a 4 foot stainless steel grill and raising and then lowering the lid is very cumbersome for me and I get tired of asking for help. It's wonderful though as we can cook a party load of meat and tons of corn at the same time. Daniel has smoked a salmon that he caught on it too. Both of our boys are very good cooks, much better than their wives, so they really don't do much cooking since the guys do it much better. And the boys take over when there's a party or family function going on, and that works for all of us. I make a couple of dishes and they take care of the rest. I taught them young, that if they were going to want to eat well, they needed to be able to cook well. It's much easier on the wallet and healthier to know what's in your food. Living in California we can grill year round, and even do it sometimes in the rain, and long as it's not pouring too hard. But some things you just need to cook inside the house. Hugs, Barbara A in Auburn CA -Original Message- From: bobby jim elbobber...@earthlink.net To: rj_ran...@yahoo.com; tmic-list@eskimo.com; Barbara Alma balmat...@aol.com Sent: Sun, Feb 14, 2010 5:54 pm Subject: Re: [TMIC] TM and Pilates Me missus too, being the foodie that she is, sometimes cooks to exhaustion, specially when it's our turn to host the semi-monthly birthday(s) party, those being where we bunch up several bee-dayze in close proximity and have one party for them all. Plus there's also Thnxgvng and Xmas; luckily, her immediate family is only about from 10 to 12 (some can't come, etc..), so her turn to host is every three or four. My family is scattered all over 2 continents so I see them every now and then. Happy Valentine's Day to all y'all. BobbyJim From: Barbara Alma To: rj_ran...@yahoo.com ; tmic-list@eskimo.com Sent: Sunday, February 14, 2010 6:20 Subject: Re: [TMIC] TM and Pilates Hi Randy, Yes, I have residuals. I can walk, but not well without aids. When I do, I use up so much of my energy that I cannot function much after doing just a very small amount, so it's just not worth it. Around the house I use a walker with wheels for household chores like laundry and while doing my cooking prep at the kitchen table, etc. I can't walk and carry hardly anything unless it's like from one counter to another in the kitchen or if there isn't any weight to it. It just doesn't work for me. Like can't walk and chew gum, you know? It's just easier than using a cane or crutch and then going back and forth with just one thing at a time. I can load it up and carry a bunch of stuff at once. But, I really give myself a workout just trying to cook at the stove. That's a real challenge for me to stand at the stove for very long and I really miss spending more time cooking. My daughter in-law says when I start to look like a cowgirl, that's when you know that I'm in trouble and looking like I'm in danger of overdoing it. So, I do as much as I can sitting. Hugs, Barbara A in Auburn CA -Original Message- From: rj_ran...@yahoo.com To: Barbara Alma balmat...@aol.com; tmic-list@eskimo.com Sent: Sat, Feb 13, 2010 9:51 pm Subject: Re: [TMIC] TM and Pilates Barbara you helped restore some of my sanity. Do you still have residual problems? My same neuro suggested that it have been auto immunine disorder. I didn't know if he was suggesting a virus and when I asked I think that he might have thought that I just don't have enough background knowledge to understand. I know that I have been checked for a lot of pathogens and each time it was always negative. I did get eatten up by mosqiutoes in the deep woods of a national forrest 2 weeks before the tm experience set in. Sent from my Verizon Wireless BlackBerry -- From: Barbara Alma balmat...@aol.com Date: Sun, 14 Feb 2010 00:39:33 -0500 To: rj_ran...@yahoo.com; tmic-list@eskimo.com Subject: Re: [TMIC] TM and Pilates Hi Randy and all TMIC, I am another one who was originally told that I had TM and am now being told that I don't, and that's by the same
Re: [TMIC] TM and Pilates
Okay, I think I want some recipe's for BBQ'ing. Janice From: bobby jim Sent: Sunday, February 14, 2010 8:01 PM To: Janice Nichols ; Patricia Cooley ; 'Barbara Alma' ; rj_ran...@yahoo.com ; tmic-list@eskimo.com Subject: Re: [TMIC] TM and Pilates We here also like to grill out as offen as we can.It's fun..(methinx). We'll grill more than meats, veggies such as corn wrapped in foil with basil leaves(fresh) wrapped around them, mixed veggies also wrapped in foil come out quite tasty as well. Bon appetit, BobbyJim From: Janice Nichols To: Patricia Cooley ; 'Barbara Alma' ; rj_ran...@yahoo.com ; tmic-list@eskimo.com Sent: Sunday, February 14, 2010 11:41 Subject: Re: [TMIC] TM and Pilates Several have mentioned the difficulty in fixing a meal.Boy, did I dread that.I have gotten better at it by doing parts of it at different times of the day.I was trying to do it all at once, but really paid a price for it.Now is much easier by planning meals like casseroles, crock pot, etc., where I don't have to stand very long.What I really like is when it is warmer my husband grills and I only have to fix a couple of side dishes. In Missouri, that is in April - but we grill until the end of October. Janice From: Patricia Cooley Sent: Sunday, February 14, 2010 10:43 AM To: 'Barbara Alma' ; rj_ran...@yahoo.com ; tmic-list@eskimo.com Subject: RE: [TMIC] TM and Pilates Barb - my lesion is also at T-10 according to my neuro. On my last MRI, he said the nerves have healed and are not swollen, but the protective coating has been destroyed and that is was causing the problems. He also confirms the TM diagnosis. I am able to walk in the house without any aids, but I cannot stand alone for anymore than a few seconds. When I am moving I am o.k. but when I stop I have to have something to hold on to. My family said I waddle like a duck when walking but at least I can get where I want to go. I used to use the walker with a wheels and a seat while cooking, but I don't have to do that anymore. I am pooped after. I also use a walker when I am out and about. I need the security of having something to hold on it. I also have an electric cart so I can get around to various functions, but don't use it much during the winter. I use it when going to things like the State Fair, etc. It is always so nice when we can compare symptoms and problems. It shows we are not alone in this. Take care and don't give up! Patti - Wisconsin From: Barbara Alma [mailto:balmat...@aol.com] Sent: Sunday, February 14, 2010 6:20 AM To: rj_ran...@yahoo.com; tmic-list@eskimo.com Subject: Re: [TMIC] TM and Pilates Hi Randy, Yes, I have residuals. I can walk, but not well without aids. When I do, I use up so much of my energy that I cannot function much after doing just a very small amount, so it's just not worth it. Around the house I use a walker with wheels for household chores like laundry and while doing my cooking prep at the kitchen table, etc. I can't walk and carry hardly anything unless it's like from one counter to another in the kitchen or if there isn't any weight to it. It just doesn't work for me. Like can't walk and chew gum, you know? It's just easier than using a cane or crutch and then going back and forth with just one thing at a time. I can load it up and carry a bunch of stuff at once. But, I really give myself a workout just trying to cook at the stove. That's a real challenge for me to stand at the stove for very long and I really miss spending more time cooking. My daughter in-law says when I start to look like a cowgirl, that's when you know that I'm in trouble and looking like I'm in danger of overdoing it. So, I do as much as I can sitting. Hugs, Barbara A in Auburn CA -Original Message- From: rj_ran...@yahoo.com To: Barbara Alma balmat...@aol.com; tmic-list@eskimo.com Sent: Sat, Feb 13, 2010 9:51 pm Subject: Re: [TMIC] TM and Pilates Barbara you helped restore some of my sanity. Do you still have residual problems? My same neuro suggested that it have been auto immunine disorder. I didn't know if he was suggesting a virus and when I asked I think that he might have thought that I just don't have enough background knowledge to understand. I know that I have been checked for a lot of pathogens and each time it was always negative. I did get eatten up by mosqiutoes in the deep woods of a national forrest 2 weeks before the tm experience set in. Sent from my Verizon Wireless BlackBerry -- From: Barbara Alma balmat...@aol.com Date: Sun, 14 Feb 2010 00:39:33 -0500 To: rj_ran...@yahoo.com; tmic-list@eskimo.com Subject: Re: [TMIC] TM and Pilates Hi Randy and all TMIC, I am another one who
Re: [TMIC] TM and Pilates
Avonex - new to me.What is it supposed to do? Janice From: bobby jim Sent: Sunday, February 14, 2010 8:25 PM To: Janice Nichols ; rj_ran...@yahoo.com ; tmic-list@eskimo.com ; Barbara Alma Subject: Re: [TMIC] TM and Pilates Improvement. me thinx she's at the stage where improvement would be the regeneration of her myelin, a feat not yet at hand. She's fully mobile, sleeps well, works an eight-hour day and loves to cook. She also likes gardening but I take care of the harder chores because after a couple of hours out in the garden, specially in the summer, she starts to fade a bit. All this, am sure, is because she's been on Avonex since March '99. BobbyJim From: Janice NicholsTo: bobby jim ; rj_ran...@yahoo.com ; tmic-list@eskimo.com ; Barbara Alma Sent: Sunday, February 14, 2010 18:26 Subject: Re: [TMIC] TM and Pilates She really had it rough.Hope, eventually, she will improve.We hear from others that after many years, improvement still happens.I wish her luck. Janice From: bobby jim Sent: Sunday, February 14, 2010 5:33 PM To: jan...@centurytel.net ; rj_ran...@yahoo.com ; tmic-list@eskimo.com ; Barbara Alma Subject: Re: [TMIC] TM and Pilates Well, me missus went from an initial TM dx to an MS dx after her second attack. Today, 12 years later, she still has the same lingering effects. A 'sore' back at T-8, chronic fatigue and a dislike for extreme heat and cold. BobbyJim From: Barbara AlmaTo: jan...@centurytel.net ; rj_ran...@yahoo.com ; tmic-list@eskimo.com Sent: Sunday, February 14, 2010 16:50 Subject: Re: [TMIC] TM and Pilates I still have all the same symptoms, they haven't changed. Initially as my body sort of woke up as I say, I went gradually from having no pain or feeling to having more and more pain. I still have decreased sensation in some areas and hyper or hypo sensation and pain in others. I have B/B issues too. As time goes on my symptoms still don't really change. My symptoms are so much like so many others here and that's the reason that I stay. I think this may be relative to the fact of it being spinal cord injury, not sure. Maybe injury is injury, and the effects of it remains the same depending upon where on the cord the injury happens. But, I may be over simplifying things. I am very pleased to say though, and this is extremely important to me, that when I do slack off on my exercises and notice my body getting weaker, it does bounce back when I get back into an exercise routine again. I generally stop doing my exercises when I get sick and need all the energy and strength just to get around the house and to the bathroom. And at that point I really weaken. I know this happens to many of you. If I have the flu or any infection, it is really hard on my body. Hugs, Barbara A in Auburn CA -Original Message- From: Janice Nichols jan...@centurytel.net To: rj_ran...@yahoo.com; tmic-list@eskimo.com; Barbara Alma balmat...@aol.com Sent: Sun, Feb 14, 2010 9:23 am Subject: Re: [TMIC] TM and Pilates Looks like Randy and Barbara are living proof that TM, or whatever, is still not understood very well. Seems strange that they follow the symptoms for a while and then change some, but then isn't that what TM does? I am certainly not the same as I was when TM hit - yet I still follow the symptoms, a couple added and a couple disappeared.What a situation it puts us in, but at least we all have each other. Can't tell you what a difference it made to discover this website.Thanks guys. Janice From: Barbara Alma Sent: Saturday, February 13, 2010 11:39 PM To: rj_ran...@yahoo.com ; tmic-list@eskimo.com Subject: Re: [TMIC] TM and Pilates Hi Randy and all TMIC, I am another one who was originally told that I had TM and am now being told that I don't, and that's by the same doctor and another as well. I've never been talked to about MS though. I had only one attack, was paralyzed from waist to toes within 15 minutes, at lesion T8-10. I even went to 2 different hospitals, as I wanted a second opinion, both with a TM diagnosis. After about 3 yrs I was told by my first Neuro, who became my treating Neuro that I didn't have TM. He didn't know what caused the paralysis and no other information as to why. Not a spinal infarction or stroke, or anything else. I had trouble with my disability claim and he was the cause so I changed Neuro's a few of years later and she had MRI's done and told me the same thing. MRI's have come a long way and the lesion is not there any longer and they can't see any cause, like a bleed or anything. She looked for evidence of a bleed because she wanted to rule out the possibility of it happening again and couldn't find it. So guys, since I've had 2 Neuro's both tell me
Re: [TMIC] TM and cooking
I once had the same problem, not so bad in opening, but a bear in closing gently. The solution is a loosely hinged push stick attached to the end of the handle with a short loop of cord (the hinge) - long enough to hang outside the grilling area when open. Alton On Feb 15, 2010, at 3:39 AM, Barbara Alma wrote: 4 foot stainless steel grill and raising and then lowering the lid is very cumbersome for me
Re: [TMIC] TM and cooking
Suggest to him that he make a pizza dough at 2 pm and grill it for dinner. Seven minutes to make the dough, then later, ten to prepare topping ingredients, 15 to grill the first side, five to top and grill the bottom, 15 for a second pizza. Alton, who will send instructions off-line on request p.s., When you make the dough you have the option of adding one or two of a zillion additives such as peanut butter or chili powder or ground black pepper or thawed corn or H, maybe strawberry dough with banana, fresh basil, and fresh mozzarella topping On Feb 15, 2010, at 3:39 AM, Barbara Alma wrote: he is great at helping with cooking or grilling.
Re: [TMIC] TM and Pilates
*Avonex is interferon beta-1a, one of the CRAB drugs that is used for MS.*
Re: [TMIC] TM and Pilates
Do you mean recipes for the sauce..???Memphis has a great assortment of sauces and powders. We almost never make our own. I'll send you some web sites. BobbyJim From: Janice Nichols To: bobby jim ; Patricia Cooley ; 'Barbara Alma' ; rj_ran...@yahoo.com ; tmic-list@eskimo.com Sent: Monday, February 15, 2010 3:03Subject: Re: [TMIC] TM and Pilates Okay, I think I want some recipe's for BBQ'ing. Janice From: bobby jim Sent: Sunday, February 14, 2010 8:01 PM To: Janice Nichols ; Patricia Cooley ; 'Barbara Alma' ; rj_ran...@yahoo.com ; tmic-list@eskimo.com Subject: Re: [TMIC] TM and Pilates We here also like to grill out as offen as we can.It's fun..(methinx). We'll grill more than meats, veggies such as corn wrapped in foil with basil leaves(fresh) wrapped around them, mixed veggies also wrapped in foil come out quite tasty as well. Bon appetit, BobbyJim From: Janice Nichols To: Patricia Cooley ; 'Barbara Alma' ; rj_ran...@yahoo.com ; tmic-list@eskimo.com Sent: Sunday, February 14, 2010 11:41 Subject: Re: [TMIC] TM and Pilates Several have mentioned the difficulty in fixing a meal.Boy, did I dread that.I have gotten better at it by doing parts of it at different times of the day.I was trying to do it all at once, but really paid a price for it.Now is much easier by planning meals like casseroles, crock pot, etc., where I don't have to stand very long.What I really like is when it is warmer my husband grills and I only have to fix a couple of side dishes. In Missouri, that is in April - but we grill until the end of October. Janice From: Patricia Cooley Sent: Sunday, February 14, 2010 10:43 AM To: 'Barbara Alma' ; rj_ran...@yahoo.com ; tmic-list@eskimo.com Subject: RE: [TMIC] TM and Pilates Barb - my lesion is also at T-10 according to my neuro. On my last MRI, he said the nerves have healed and are not swollen, but the protective coating has been destroyed and that is was causing the problems. He also confirms the TM diagnosis. I am able to walk in the house without any aids, but I cannot stand alone for anymore than a few seconds. When I am moving I am o.k. but when I stop I have to have something to hold on to. My family said I waddle like a duck when walking but at least I can get where I want to go. I used to use the walker with a wheels and a seat while cooking, but I don't have to do that anymore. I am pooped after. I also use a walker when I am out and about. I need the security of having something to hold on it. I also have an electric cart so I can get around to various functions, but don't use it much during the winter. I use it when going to things like the State Fair, etc. It is always so nice when we can compare symptoms and problems. It shows we are not alone in this. Take care and don't give up! Patti - Wisconsin From: Barbara Alma [mailto:balmat...@aol.com] Sent: Sunday, February 14, 2010 6:20 AM To: rj_ran...@yahoo.com; tmic-list@eskimo.com Subject: Re: [TMIC] TM and Pilates Hi Randy, Yes, I have residuals. I can walk, but not well without aids. When I do, I use up so much of my energy that I cannot function much after doing just a very small amount, so it's just not worth it. Around the house I use a walker with wheels for household chores like laundry and while doing my cooking prep at the kitchen table, etc. I can't walk and carry hardly anything unless it's like from one counter to another in the kitchen or if there isn't any weight to it. It just doesn't work for me. Like can't walk and chew gum, you know? It's just easier than using a cane or crutch and then going back and forth with just one thing at a time. I can load it up and carry a bunch of stuff at once. But, I really give myself a workout just trying to cook at the stove. That's a real challenge for me to stand at the stove for very long and I really miss spending more time cooking. My daughter in-law says when I start to look like a cowgirl, that's when you know that I'm in trouble and looking like I'm in danger of overdoing it. So, I do as much as I can sitting. Hugs, Barbara A in Auburn CA -Original Message- From: rj_ran...@yahoo.com To: Barbara Alma balmat...@aol.com; tmic-list@eskimo.com Sent: Sat, Feb 13, 2010 9:51 pm Subject: Re: [TMIC] TM and Pilates Barbara you helped restore some of my sanity. Do you still have residual problems? My same neuro suggested that it have been auto immunine disorder. I didn't know if he was suggesting a virus and when I asked I think that he might have thought that I just don't have enough background knowledge to understand. I know that I have been checked for a lot of pathogens and each time it was always
Re: [TMIC] TM and cooking
My hubby is Boss of the Barbecue here in Calgary. We also can barbecue year round even when it snows. Our barbecue is on the basement 'walk-out' patio so is undercover. Of course we don't use it when the temps are below about minus 10 or minus 15 Celcius. It can take a little bit longer as you have to keep the barbecue temp up. It is a nice break from 'comfort food' cooked in the house all winter to have a barbecued hamburger, steak or pork chop etc in the middle of winter. :) Heather in Calgary - Original Message - From: Barbara Alma To: elbobber...@earthlink.net ; tmic-list@eskimo.com Sent: Monday, February 15, 2010 1:39 AM Subject: Re: [TMIC] TM and cooking We also grill a lot, and our son Daniel and his family live with us right now and when he isn't in class, working or having too much homework, he is great at helping with cooking or grilling. I try to get him to take over 2 nights or more a week, but getting increasingly more difficult with his new schedule. He makes such a huge deal out of meat prep and cooking though that he can hardly manage to get a whole meal done. Mind you he's a great cook, nearly chef quality in some things that he prepares. I don't grill much myself since we have a 4 foot stainless steel grill and raising and then lowering the lid is very cumbersome for me and I get tired of asking for help. It's wonderful though as we can cook a party load of meat and tons of corn at the same time. Daniel has smoked a salmon that he caught on it too. Both of our boys are very good cooks, much better than their wives, so they really don't do much cooking since the guys do it much better. And the boys take over when there's a party or family function going on, and that works for all of us. I make a couple of dishes and they take care of the rest. I taught them young, that if they were going to want to eat well, they needed to be able to cook well. It's much easier on the wallet and healthier to know what's in your food. Living in California we can grill year round, and even do it sometimes in the rain, and long as it's not pouring too hard. But some things you just need to cook inside the house. Hugs, Barbara A in Auburn CA -Original Message- From: bobby jim elbobber...@earthlink.net To: rj_ran...@yahoo.com; tmic-list@eskimo.com; Barbara Alma balmat...@aol.com Sent: Sun, Feb 14, 2010 5:54 pm Subject: Re: [TMIC] TM and Pilates Me missus too, being the foodie that she is, sometimes cooks to exhaustion, specially when it's our turn to host the semi-monthly birthday(s) party, those being where we bunch up several bee-dayze in close proximity and have one party for them all. Plus there's also Thnxgvng and Xmas; luckily, her immediate family is only about from 10 to 12 (some can't come, etc..), so her turn to host is every three or four. My family is scattered all over 2 continents so I see them every now and then. Happy Valentine's Day to all y'all. BobbyJim From: Barbara Alma To: rj_ran...@yahoo.com ; tmic-list@eskimo.com Sent: Sunday, February 14, 2010 6:20 Subject: Re: [TMIC] TM and Pilates Hi Randy, Yes, I have residuals. I can walk, but not well without aids. When I do, I use up so much of my energy that I cannot function much after doing just a very small amount, so it's just not worth it. Around the house I use a walker with wheels for household chores like laundry and while doing my cooking prep at the kitchen table, etc. I can't walk and carry hardly anything unless it's like from one counter to another in the kitchen or if there isn't any weight to it. It just doesn't work for me. Like can't walk and chew gum, you know? It's just easier than using a cane or crutch and then going back and forth with just one thing at a time. I can load it up and carry a bunch of stuff at once. But, I really give myself a workout just trying to cook at the stove. That's a real challenge for me to stand at the stove for very long and I really miss spending more time cooking. My daughter in-law says when I start to look like a cowgirl, that's when you know that I'm in trouble and looking like I'm in danger of overdoing it. So, I do as much as I can sitting. Hugs, Barbara A in Auburn CA -Original Message- From: rj_ran...@yahoo.com To: Barbara Alma balmat...@aol.com; tmic-list@eskimo.com Sent: Sat, Feb 13, 2010 9:51 pm Subject: Re: [TMIC] TM and Pilates Barbara you helped restore some of my sanity. Do you still have residual problems? My same neuro suggested that it have been auto immunine disorder. I didn't know if he was suggesting a virus and when I asked I think that he might have thought that I just don't have enough background knowledge to understand. I know that I have been checked for a lot of pathogens and each time it was always negative. I did get
RE: [TMIC] TM and Pilates
I also do not have a legion on my spinal cord at this time and Dr. Kerr was my neurologist and he told me that I definitely have TM and that does not matter. It is not always present in an MRI. I believe him. I have TM. From: Barbara Alma [mailto:balmat...@aol.com] Sent: Sunday, February 14, 2010 12:40 AM To: rj_ran...@yahoo.com; tmic-list@eskimo.com Subject: Re: [TMIC] TM and Pilates Hi Randy and all TMIC, I am another one who was originally told that I had TM and am now being told that I don't, and that's by the same doctor and another as well. I've never been talked to about MS though. I had only one attack, was paralyzed from waist to toes within 15 minutes, at lesion T8-10. I even went to 2 different hospitals, as I wanted a second opinion, both with a TM diagnosis. After about 3 yrs I was told by my first Neuro, who became my treating Neuro that I didn't have TM. He didn't know what caused the paralysis and no other information as to why. Not a spinal infarction or stroke, or anything else. I had trouble with my disability claim and he was the cause so I changed Neuro's a few of years later and she had MRI's done and told me the same thing. MRI's have come a long way and the lesion is not there any longer and they can't see any cause, like a bleed or anything. She looked for evidence of a bleed because she wanted to rule out the possibility of it happening again and couldn't find it. So guys, since I've had 2 Neuro's both tell me that I don't have TM, I really don't care. I'm sticking with it, and you are just stuck with me. I'm happy here, I get the support that I need, I give it when I can, and I'm not going anywhere. I really don't know what caused my problems, and I really don't care at this point. It is what it is. I've had this crap for over 10 years and it's not going away. I had TM symptoms and that's where I started, so I'm sticking with it. Hugs, Barbara A in Auburn CA -Original Message- From: rj_ran...@yahoo.com To: Grace M. grace...@gmail.com Cc: Janice Nichols jan...@centurytel.net; tmic-list@eskimo.com Sent: Sat, Feb 13, 2010 1:18 pm Subject: Re: [TMIC] TM and Pilates Janice its ok. I've actually been wondering if I should stay. I feel very awkward these days. I've been told more than once that I had all the textbook signs for ms and I did loose my left foot followed by my right leg then my bladder was told I had tm and went through the most unbelievable facial pain. Had several doc all with different ideas and one that got me on my feet and another that got me in pt and walking again I've been hospitalized 4 times and now suddenly I am told that I don't have ms and show no signs of tm. I pray to God nothing comes back. I spent an entire summer pushing myself on a tread mill trying to rebuild my strenght but that was after the years of trying to cross my legs and do odd excercises on the bed floor and chair that the pt taught me. It sure has been a mentally brain warping experience. Tx grace for calling me fam. This is a great group of people and have helped me get through a lot of challenges as well as put up with my venting from time to time. I think we all have to vent. --Original Message-- From: Grace M. To: rj_ran...@yahoo.com Cc: Janice Nichols Cc: tmic-list@eskimo.com Subject: Re: [TMIC] TM and Pilates Sent: Feb 13, 2010 2:26 PM Randy, You're like family here at the site and have a lot of good input to offer. I think that you and I came around the same time. Janice, we don't have to currently be ill in order to participate here. ALL are welcome. It's not an exclusive club. Respectfully, Grace Sent from my Verizon Wireless BlackBerry
Re: [TMIC] TM and Pilates
Hi Randy, Yes, I have residuals. I can walk, but not well without aids. When I do, I use up so much of my energy that I cannot function much after doing just a very small amount, so it's just not worth it. Around the house I use a walker with wheels for household chores like laundry and while doing my cooking prep at the kitchen table, etc. I can't walk and carry hardly anything unless it's like from one counter to another in the kitchen or if there isn't any weight to it. It just doesn't work for me. Like can't walk and chew gum, you know? It's just easier than using a cane or crutch and then going back and forth with just one thing at a time. I can load it up and carry a bunch of stuff at once. But, I really give myself a workout just trying to cook at the stove. That's a real challenge for me to stand at the stove for very long and I really miss spending more time cooking. My daughter in-law says when I start to look like a cowgirl, that's when you know that I'm in trouble and looking like I'm in danger of overdoing it. So, I do as much as I can sitting. Hugs, Barbara A in Auburn CA -Original Message- From: rj_ran...@yahoo.com To: Barbara Alma balmat...@aol.com; tmic-list@eskimo.com Sent: Sat, Feb 13, 2010 9:51 pm Subject: Re: [TMIC] TM and Pilates Barbara you helped restore some of my sanity. Do you still have residual problems? My same neuro suggested that it have been auto immunine disorder. I didn't know if he was suggesting a virus and when I asked I think that he might have thought that I just don't have enough background knowledge to understand. I know that I have been checked for a lot of pathogens and each time it was always negative. I did get eatten up by mosqiutoes in the deep woods of a national forrest 2 weeks before the tm experience set in. Sent from my Verizon Wireless BlackBerry From: Barbara Alma balmat...@aol.com Date: Sun, 14 Feb 2010 00:39:33 -0500 To: rj_ran...@yahoo.com; tmic-list@eskimo.com Subject: Re: [TMIC] TM and Pilates Hi Randy and all TMIC, I am another one who was originally told that I had TM and am now being told that I don't, and that's by the same doctor and another as well. I've never been talked to about MS though. I had only one attack, was paralyzed from waist to toes within 15 minutes, at lesion T8-10. I even went to 2 different hospitals, as I wanted a second opinion, both with a TM diagnosis. After about 3 yrs I was told by my first Neuro, who became my treating Neuro that I didn't have TM. He didn't know what caused the paralysis and no other information as to why. Not a spinal infarction or stroke, or anything else. I had trouble with my disability claim and he was the cause so I changed Neuro's a few of years later and she had MRI's done and told me the same thing. MRI's have come a long way and the lesion is not there any longer and they can't see any cause, like a bleed or anything. She looked for evidence of a bleed because she wanted to rule out the possibility of it happening again and couldn't find it. So guys, since I've had 2 Neuro's both tell me that I don't have TM, I really don't care. I'm sticking with it, and you are just stuck with me. I'm happy here, I get the support that I need, I give it when I can, and I'm not going anywhere. I really don't know what caused my problems, and I really don't care at this point. It is what it is. I've had this crap for over 10 years and it's not going away. I had TM symptoms and that's where I started, so I'm sticking with it. Hugs, Barbara A in Auburn CA -Original Message- From: rj_ran...@yahoo.com To: Grace M. grace...@gmail.com Cc: Janice Nichols jan...@centurytel.net; tmic-list@eskimo.com Sent: Sat, Feb 13, 2010 1:18 pm Subject: Re: [TMIC] TM and Pilates Janice its ok. I've actually been wondering if I should stay. I feel very wkward these days. I've been told more than once that I had all the textbook igns for ms and I did loose my left foot followed by my right leg then my ladder was told I had tm and went through the most unbelievable facial pain. ad several doc all with different ideas and one that got me on my feet and nother that got me in pt and walking again I've been hospitalized 4 times and ow suddenly I am told that I don't have ms and show no signs of tm. I pray to od nothing comes back. I spent an entire summer pushing myself on a tread mill rying to rebuild my strenght but that was after the years of trying to cross my egs and do odd excercises on the bed floor and chair that the pt taught me. It ure has been a mentally brain warping experience. Tx grace for calling me fam. his is a great group of people and have helped me get through a lot of hallenges as well as put up with my venting from time to time. I think we all ave to vent. -Original Message-- rom: Grace M. o: rj_ran...@yahoo.com c: Janice Nichols c: tmic-list@eskimo.com ubject: Re: [TMIC] TM
Re: [TMIC] TM and Pilates
--- On Sun, 2/14/10, lynne myers lynnemye...@yahoo.com wrote: From: lynne myers lynnemye...@yahoo.com Subject: Re: [TMIC] TM and Pilates To: rj_ran...@yahoo.com Date: Sunday, February 14, 2010, 8:16 AM I think what your neuro was telling you was that TM is part of a group of diesases that are autoimmune disorders. These include diabetes, lupus and arthrits to name a few. They are caused when the bodys immune system attacks it for some reason. Lynne --- On Sun, 2/14/10, rj_ran...@yahoo.com rj_ran...@yahoo.com wrote: From: rj_ran...@yahoo.com rj_ran...@yahoo.com Subject: Re: [TMIC] TM and Pilates To: Barbara Alma balmat...@aol.com, tmic-list@eskimo.com Date: Sunday, February 14, 2010, 12:51 AM Barbara you helped restore some of my sanity. Do you still have residual problems? My same neuro suggested that it have been auto immunine disorder. I didn't know if he was suggesting a virus and when I asked I think that he might have thought that I just don't have enough background knowledge to understand. I know that I have been checked for a lot of pathogens and each time it was always negative. I did get eatten up by mosqiutoes in the deep woods of a national forrest 2 weeks before the tm experience set in. Sent from my Verizon Wireless BlackBerry
RE: [TMIC] TM and Pilates
Barb - my lesion is also at T-10 according to my neuro. On my last MRI, he said the nerves have healed and are not swollen, but the protective coating has been destroyed and that is was causing the problems. He also confirms the TM diagnosis. I am able to walk in the house without any aids, but I cannot stand alone for anymore than a few seconds. When I am moving I am o.k. but when I stop I have to have something to hold on to. My family said I waddle like a duck when walking but at least I can get where I want to go. I used to use the walker with a wheels and a seat while cooking, but I don't have to do that anymore. I am pooped after. I also use a walker when I am out and about. I need the security of having something to hold on it. I also have an electric cart so I can get around to various functions, but don't use it much during the winter. I use it when going to things like the State Fair, etc. It is always so nice when we can compare symptoms and problems. It shows we are not alone in this. Take care and don't give up! Patti - Wisconsin From: Barbara Alma [mailto:balmat...@aol.com] Sent: Sunday, February 14, 2010 6:20 AM To: rj_ran...@yahoo.com; tmic-list@eskimo.com Subject: Re: [TMIC] TM and Pilates Hi Randy, Yes, I have residuals. I can walk, but not well without aids. When I do, I use up so much of my energy that I cannot function much after doing just a very small amount, so it's just not worth it. Around the house I use a walker with wheels for household chores like laundry and while doing my cooking prep at the kitchen table, etc. I can't walk and carry hardly anything unless it's like from one counter to another in the kitchen or if there isn't any weight to it. It just doesn't work for me. Like can't walk and chew gum, you know? It's just easier than using a cane or crutch and then going back and forth with just one thing at a time. I can load it up and carry a bunch of stuff at once. But, I really give myself a workout just trying to cook at the stove. That's a real challenge for me to stand at the stove for very long and I really miss spending more time cooking. My daughter in-law says when I start to look like a cowgirl, that's when you know that I'm in trouble and looking like I'm in danger of overdoing it. So, I do as much as I can sitting. Hugs, Barbara A in Auburn CA -Original Message- From: rj_ran...@yahoo.com To: Barbara Alma balmat...@aol.com; tmic-list@eskimo.com Sent: Sat, Feb 13, 2010 9:51 pm Subject: Re: [TMIC] TM and Pilates Barbara you helped restore some of my sanity. Do you still have residual problems? My same neuro suggested that it have been auto immunine disorder. I didn't know if he was suggesting a virus and when I asked I think that he might have thought that I just don't have enough background knowledge to understand. I know that I have been checked for a lot of pathogens and each time it was always negative. I did get eatten up by mosqiutoes in the deep woods of a national forrest 2 weeks before the tm experience set in. Sent from my Verizon Wireless BlackBerry _ From: Barbara Alma balmat...@aol.com Date: Sun, 14 Feb 2010 00:39:33 -0500 To: rj_ran...@yahoo.com; tmic-list@eskimo.com Subject: Re: [TMIC] TM and Pilates Hi Randy and all TMIC, I am another one who was originally told that I had TM and am now being told that I don't, and that's by the same doctor and another as well. I've never been talked to about MS though. I had only one attack, was paralyzed from waist to toes within 15 minutes, at lesion T8-10. I even went to 2 different hospitals, as I wanted a second opinion, both with a TM diagnosis. After about 3 yrs I was told by my first Neuro, who became my treating Neuro that I didn't have TM. He didn't know what caused the paralysis and no other information as to why. Not a spinal infarction or stroke, or anything else. I had trouble with my disability claim and he was the cause so I changed Neuro's a few of years later and she had MRI's done and told me the same thing. MRI's have come a long way and the lesion is not there any longer and they can't see any cause, like a bleed or anything. She looked for evidence of a bleed because she wanted to rule out the possibility of it happening again and couldn't find it. So guys, since I've had 2 Neuro's both tell me that I don't have TM, I really don't care. I'm sticking with it, and you are just stuck with me. I'm happy here, I get the support that I need, I give it when I can, and I'm not going anywhere. I really don't know what caused my problems, and I really don't care at this point. It is what it is. I've had this crap for over 10 years and it's not going away. I had TM symptoms and that's where I started, so I'm sticking with it. Hugs, Barbara A in Auburn CA -Original Message- From: rj_ran...@yahoo.com To: Grace M. grace...@gmail.com Cc: Janice Nichols jan...@centurytel.net; tmic
Re: [TMIC] TM and Pilates
Looks like Randy and Barbara are living proof that TM, or whatever, is still not understood very well. Seems strange that they follow the symptoms for a while and then change some, but then isn't that what TM does? I am certainly not the same as I was when TM hit - yet I still follow the symptoms, a couple added and a couple disappeared.What a situation it puts us in, but at least we all have each other. Can't tell you what a difference it made to discover this website.Thanks guys. Janice From: Barbara Alma Sent: Saturday, February 13, 2010 11:39 PM To: rj_ran...@yahoo.com ; tmic-list@eskimo.com Subject: Re: [TMIC] TM and Pilates Hi Randy and all TMIC, I am another one who was originally told that I had TM and am now being told that I don't, and that's by the same doctor and another as well. I've never been talked to about MS though. I had only one attack, was paralyzed from waist to toes within 15 minutes, at lesion T8-10. I even went to 2 different hospitals, as I wanted a second opinion, both with a TM diagnosis. After about 3 yrs I was told by my first Neuro, who became my treating Neuro that I didn't have TM. He didn't know what caused the paralysis and no other information as to why. Not a spinal infarction or stroke, or anything else. I had trouble with my disability claim and he was the cause so I changed Neuro's a few of years later and she had MRI's done and told me the same thing. MRI's have come a long way and the lesion is not there any longer and they can't see any cause, like a bleed or anything. She looked for evidence of a bleed because she wanted to rule out the possibility of it happening again and couldn't find it. So guys, since I've had 2 Neuro's both tell me that I don't have TM, I really don't care. I'm sticking with it, and you are just stuck with me. I'm happy here, I get the support that I need, I give it when I can, and I'm not going anywhere. I really don't know what caused my problems, and I really don't care at this point. It is what it is. I've had this crap for over 10 years and it's not going away. I had TM symptoms and that's where I started, so I'm sticking with it. Hugs, Barbara A in Auburn CA -Original Message- From: rj_ran...@yahoo.com To: Grace M. grace...@gmail.com Cc: Janice Nichols jan...@centurytel.net; tmic-list@eskimo.com Sent: Sat, Feb 13, 2010 1:18 pm Subject: Re: [TMIC] TM and Pilates Janice its ok. I've actually been wondering if I should stay. I feel very awkward these days. I've been told more than once that I had all the textbook signs for ms and I did loose my left foot followed by my right leg then my bladder was told I had tm and went through the most unbelievable facial pain. Had several doc all with different ideas and one that got me on my feet and another that got me in pt and walking again I've been hospitalized 4 times and now suddenly I am told that I don't have ms and show no signs of tm. I pray to God nothing comes back. I spent an entire summer pushing myself on a tread mill trying to rebuild my strenght but that was after the years of trying to cross my legs and do odd excercises on the bed floor and chair that the pt taught me. It sure has been a mentally brain warping experience. Tx grace for calling me fam. This is a great group of people and have helped me get through a lot of challenges as well as put up with my venting from time to time. I think we all have to vent. --Original Message-- From: Grace M. To: rj_ran...@yahoo.com Cc: Janice Nichols Cc: tmic-list@eskimo.com Subject: Re: [TMIC] TM and Pilates Sent: Feb 13, 2010 2:26 PM Randy, You're like family here at the site and have a lot of good input to offer. I think that you and I came around the same time. Janice, we don't have to currently be ill in order to participate here. ALL are welcome. It's not an exclusive club. Respectfully, Grace Sent from my Verizon Wireless BlackBerry
Re: [TMIC] TM and Pilates
*Hi Janice, * *One has to remember that the term Transverse Myelitis, means exactly that. Transverse: Across or crosswise. Myelitis: inflammation of the spinal cord. Inflammation of the cord can be caused by several different disease processes, but it can also be idiopathic, meaning that there is no known cause. Just because there is an underlying disease process does not negate the fact that the patient has indeed suffered a Transverse Myelitis attack. There are TM patients here with NMO (Myself, with relapsing LETM), Sjogrens ( Linda C. with relapsing TM) MS, those who have experienced ADEM, and other processes. There are also many patients who have experienced *idiopathic* TM, meaning that there is no known cause. * *Gracie* * * * *
Re: [TMIC] TM and Pilates
Several have mentioned the difficulty in fixing a meal.Boy, did I dread that.I have gotten better at it by doing parts of it at different times of the day.I was trying to do it all at once, but really paid a price for it.Now is much easier by planning meals like casseroles, crock pot, etc., where I don't have to stand very long.What I really like is when it is warmer my husband grills and I only have to fix a couple of side dishes. In Missouri, that is in April - but we grill until the end of October. Janice From: Patricia Cooley Sent: Sunday, February 14, 2010 10:43 AM To: 'Barbara Alma' ; rj_ran...@yahoo.com ; tmic-list@eskimo.com Subject: RE: [TMIC] TM and Pilates Barb - my lesion is also at T-10 according to my neuro. On my last MRI, he said the nerves have healed and are not swollen, but the protective coating has been destroyed and that is was causing the problems. He also confirms the TM diagnosis. I am able to walk in the house without any aids, but I cannot stand alone for anymore than a few seconds. When I am moving I am o.k. but when I stop I have to have something to hold on to. My family said I waddle like a duck when walking but at least I can get where I want to go. I used to use the walker with a wheels and a seat while cooking, but I don't have to do that anymore. I am pooped after. I also use a walker when I am out and about. I need the security of having something to hold on it. I also have an electric cart so I can get around to various functions, but don't use it much during the winter. I use it when going to things like the State Fair, etc. It is always so nice when we can compare symptoms and problems. It shows we are not alone in this. Take care and don't give up! Patti - Wisconsin From: Barbara Alma [mailto:balmat...@aol.com] Sent: Sunday, February 14, 2010 6:20 AM To: rj_ran...@yahoo.com; tmic-list@eskimo.com Subject: Re: [TMIC] TM and Pilates Hi Randy, Yes, I have residuals. I can walk, but not well without aids. When I do, I use up so much of my energy that I cannot function much after doing just a very small amount, so it's just not worth it. Around the house I use a walker with wheels for household chores like laundry and while doing my cooking prep at the kitchen table, etc. I can't walk and carry hardly anything unless it's like from one counter to another in the kitchen or if there isn't any weight to it. It just doesn't work for me. Like can't walk and chew gum, you know? It's just easier than using a cane or crutch and then going back and forth with just one thing at a time. I can load it up and carry a bunch of stuff at once. But, I really give myself a workout just trying to cook at the stove. That's a real challenge for me to stand at the stove for very long and I really miss spending more time cooking. My daughter in-law says when I start to look like a cowgirl, that's when you know that I'm in trouble and looking like I'm in danger of overdoing it. So, I do as much as I can sitting. Hugs, Barbara A in Auburn CA -Original Message- From: rj_ran...@yahoo.com To: Barbara Alma balmat...@aol.com; tmic-list@eskimo.com Sent: Sat, Feb 13, 2010 9:51 pm Subject: Re: [TMIC] TM and Pilates Barbara you helped restore some of my sanity. Do you still have residual problems? My same neuro suggested that it have been auto immunine disorder. I didn't know if he was suggesting a virus and when I asked I think that he might have thought that I just don't have enough background knowledge to understand. I know that I have been checked for a lot of pathogens and each time it was always negative. I did get eatten up by mosqiutoes in the deep woods of a national forrest 2 weeks before the tm experience set in. Sent from my Verizon Wireless BlackBerry From: Barbara Alma balmat...@aol.com Date: Sun, 14 Feb 2010 00:39:33 -0500 To: rj_ran...@yahoo.com; tmic-list@eskimo.com Subject: Re: [TMIC] TM and Pilates Hi Randy and all TMIC, I am another one who was originally told that I had TM and am now being told that I don't, and that's by the same doctor and another as well. I've never been talked to about MS though. I had only one attack, was paralyzed from waist to toes within 15 minutes, at lesion T8-10. I even went to 2 different hospitals, as I wanted a second opinion, both with a TM diagnosis. After about 3 yrs I was told by my first Neuro, who became my treating Neuro that I didn't have TM. He didn't know what caused the paralysis and no other information as to why. Not a spinal infarction or stroke, or anything else. I had trouble with my disability claim and he was the cause so I changed Neuro's a few of years later and she had MRI's done and told me the same thing. MRI's have come a long way and the lesion is not there any longer and they can't
Re: [TMIC] TM and Pilates
That's me - Idiopathic. Doctors went nuts trying to come up with a reason for the TM attack.Said we will never know now, but apparently I was in pretty good health before it hit me. Janice From: Grace M. Sent: Sunday, February 14, 2010 11:38 AM To: Janice Nichols Cc: tmic-list@eskimo.com Subject: Re: [TMIC] TM and Pilates Hi Janice, One has to remember that the term Transverse Myelitis, means exactly that. Transverse: Across or crosswise. Myelitis: inflammation of the spinal cord. Inflammation of the cord can be caused by several different disease processes, but it can also be idiopathic, meaning that there is no known cause. Just because there is an underlying disease process does not negate the fact that the patient has indeed suffered a Transverse Myelitis attack. There are TM patients here with NMO (Myself, with relapsing LETM), Sjogrens ( Linda C. with relapsing TM) MS, those who have experienced ADEM, and other processes. There are also many patients who have experienced *idiopathic* TM, meaning that there is no known cause. Gracie
Re: [TMIC] TM and Pilates
I still have all the same symptoms, they haven't changed. Initially as my body sort of woke up as I say, I went gradually from having no pain or feeling to having more and more pain. I still have decreased sensation in some areas and hyper or hypo sensation and pain in others. I have B/B issues too. As time goes on my symptoms still don't really change. My symptoms are so much like so many others here and that's the reason that I stay. I think this may be relative to the fact of it being spinal cord injury, not sure. Maybe injury is injury, and the effects of it remains the same depending upon where on the cord the injury happens. But, I may be over simplifying things. I am very pleased to say though, and this is extremely important to me, that when I do slack off on my exercises and notice my body getting weaker, it does bounce back when I get back into an exercise routine again. I generally stop doing my exercises when I get sick and need all the energy and strength just to get around the house and to the bathroom. And at that point I really weaken. I know this happens to many of you. If I have the flu or any infection, it is really hard on my body. Hugs, Barbara A in Auburn CA -Original Message- From: Janice Nichols jan...@centurytel.net To: rj_ran...@yahoo.com; tmic-list@eskimo.com; Barbara Alma balmat...@aol.com Sent: Sun, Feb 14, 2010 9:23 am Subject: Re: [TMIC] TM and Pilates Looks like Randy and Barbara are living proof that TM, or whatever, is still not understood very well. Seems strange that they follow the symptoms for a while and then change some, but then isn't that what TM does? I am certainly not the same as I was when TM hit - yet I still follow the symptoms, a couple added and a couple disappeared.What a situation it puts us in, but at least we all have each other. Can't tell you what a difference it made to discover this website.Thanks guys. Janice From: Barbara Alma Sent: Saturday, February 13, 2010 11:39 PM To: rj_ran...@yahoo.com ; tmic-list@eskimo.com Subject: Re: [TMIC] TM and Pilates Hi Randy and all TMIC, I am another one who was originally told that I had TM and am now being told that I don't, and that's by the same doctor and another as well. I've never been talked to about MS though. I had only one attack, was paralyzed from waist to toes within 15 minutes, at lesion T8-10. I even went to 2 different hospitals, as I wanted a second opinion, both with a TM diagnosis. After about 3 yrs I was told by my first Neuro, who became my treating Neuro that I didn't have TM. He didn't know what caused the paralysis and no other information as to why. Not a spinal infarction or stroke, or anything else. I had trouble with my disability claim and he was the cause so I changed Neuro's a few of years later and she had MRI's done and told me the same thing. MRI's have come a long way and the lesion is not there any longer and they can't see any cause, like a bleed or anything. She looked for evidence of a bleed because she wanted to rule out the possibility of it happening again and couldn't find it. So guys, since I've had 2 Neuro's both tell me that I don't have TM, I really don't care. I'm sticking with it, and you are just stuck with me. I'm happy here, I get the support that I need, I give it when I can, and I'm not going anywhere. I really don't know what caused my problems, and I really don't care at this point. It is what it is. I've had this crap for over 10 years and it's not going away. I had TM symptoms and that's where I started, so I'm sticking with it. Hugs, Barbara A in Auburn CA -Original Message- From: rj_ran...@yahoo.com To: Grace M. grace...@gmail.com Cc: Janice Nichols jan...@centurytel.net; tmic-list@eskimo.com Sent: Sat, Feb 13, 2010 1:18 pm Subject: Re: [TMIC] TM and Pilates Janice its ok. I've actually been wondering if I should stay. I feel very wkward these days. I've been told more than once that I had all the textbook igns for ms and I did loose my left foot followed by my right leg then my ladder was told I had tm and went through the most unbelievable facial pain. ad several doc all with different ideas and one that got me on my feet and nother that got me in pt and walking again I've been hospitalized 4 times and ow suddenly I am told that I don't have ms and show no signs of tm. I pray to od nothing comes back. I spent an entire summer pushing myself on a tread mill rying to rebuild my strenght but that was after the years of trying to cross my egs and do odd excercises on the bed floor and chair that the pt taught me. It ure has been a mentally brain warping experience. Tx grace for calling me fam. his is a great group of people and have helped me get through a lot of hallenges as well as put up with my venting from time to time. I think we all ave to vent. -Original Message-- rom: Grace M. o: rj_ran
Re: [TMIC] TM and Pilates
Well, me missus went from an initial TM dx to an MS dx after her second attack. Today, 12 years later, she still has the same lingering effects. A 'sore' back at T-8, chronic fatigue and a dislike for extreme heat and cold. BobbyJim From: Barbara AlmaTo: jan...@centurytel.net ; rj_ran...@yahoo.com ; tmic-list@eskimo.com Sent: Sunday, February 14, 2010 16:50 Subject: Re: [TMIC] TM and Pilates I still have all the same symptoms, they haven't changed. Initially as my body sort of woke up as I say, I went gradually from having no pain or feeling to having more and more pain. I still have decreased sensation in some areas and hyper or hypo sensation and pain in others. I have B/B issues too. As time goes on my symptoms still don't really change. My symptoms are so much like so many others here and that's the reason that I stay. I think this may be relative to the fact of it being spinal cord injury, not sure. Maybe injury is injury, and the effects of it remains the same depending upon where on the cord the injury happens. But, I may be over simplifying things. I am very pleased to say though, and this is extremely important to me, that when I do slack off on my exercises and notice my body getting weaker, it does bounce back when I get back into an exercise routine again. I generally stop doing my exercises when I get sick and need all the energy and strength just to get around the house and to the bathroom. And at that point I really weaken. I know this happens to many of you. If I have the flu or any infection, it is really hard on my body. Hugs, Barbara A in Auburn CA -Original Message- From: Janice Nichols jan...@centurytel.net To: rj_ran...@yahoo.com; tmic-list@eskimo.com; Barbara Alma balmat...@aol.com Sent: Sun, Feb 14, 2010 9:23 am Subject: Re: [TMIC] TM and Pilates Looks like Randy and Barbara are living proof that TM, or whatever, is still not understood very well. Seems strange that they follow the symptoms for a while and then change some, but then isn't that what TM does? I am certainly not the same as I was when TM hit - yet I still follow the symptoms, a couple added and a couple disappeared.What a situation it puts us in, but at least we all have each other. Can't tell you what a difference it made to discover this website.Thanks guys. Janice From: Barbara Alma Sent: Saturday, February 13, 2010 11:39 PM To: rj_ran...@yahoo.com ; tmic-list@eskimo.com Subject: Re: [TMIC] TM and Pilates Hi Randy and all TMIC, I am another one who was originally told that I had TM and am now being told that I don't, and that's by the same doctor and another as well. I've never been talked to about MS though. I had only one attack, was paralyzed from waist to toes within 15 minutes, at lesion T8-10. I even went to 2 different hospitals, as I wanted a second opinion, both with a TM diagnosis. After about 3 yrs I was told by my first Neuro, who became my treating Neuro that I didn't have TM. He didn't know what caused the paralysis and no other information as to why. Not a spinal infarction or stroke, or anything else. I had trouble with my disability claim and he was the cause so I changed Neuro's a few of years later and she had MRI's done and told me the same thing. MRI's have come a long way and the lesion is not there any longer and they can't see any cause, like a bleed or anything. She looked for evidence of a bleed because she wanted to rule out the possibility of it happening again and couldn't find it. So guys, since I've had 2 Neuro's both tell me that I don't have TM, I really don't care. I'm sticking with it, and you are just stuck with me. I'm happy here, I get the support that I need, I give it when I can, and I'm not going anywhere. I really don't know what caused my problems, and I really don't care at this point. It is what it is. I've had this crap for over 10 years and it's not going away. I had TM symptoms and that's where I started, so I'm sticking with it. Hugs, Barbara A in Auburn CA -Original Message- From: rj_ran...@yahoo.com To: Grace M. grace...@gmail.com Cc: Janice Nichols jan...@centurytel.net; tmic-list@eskimo.com Sent: Sat, Feb 13, 2010 1:18 pm Subject: Re: [TMIC] TM and Pilates Janice its ok. I've actually been wondering if I should stay. I feel very awkward these days. I've been told more than once that I had all the textbook signs for ms and I did loose my left foot followed by my right leg then my bladder was told I had tm and went through the most unbelievable facial pain. Had several doc all with different ideas and one that got me on my feet and another that got me in pt and walking again I've been hospitalized 4 times and now suddenly I am told that I don't have ms and show no signs of tm. I pray to God nothing comes back. I spent an entire summer pushing
Re: [TMIC] TM and Pilates
Your symptoms sound a lot like mine. I was so glad to start feeling something - until the nerve pain started. Bummer But, I must say that the last set of shots I got in my back have lasted over 4 months now. Pretty exciting! Don't know if you remember my mentioning maybe traveling to Savannah to see my sister and her husband a while ago, but we leave tomorrow morning and I am so excited I can hardly stand it! First trip since TM. Wish us luck - it is a 15 hour trip, but we will take it slow. After tonite, I will be back on with you all in a couple of weeks. Janice From: Barbara Alma Sent: Sunday, February 14, 2010 4:50 PM To: jan...@centurytel.net ; rj_ran...@yahoo.com ; tmic-list@eskimo.com Subject: Re: [TMIC] TM and Pilates I still have all the same symptoms, they haven't changed. Initially as my body sort of woke up as I say, I went gradually from having no pain or feeling to having more and more pain. I still have decreased sensation in some areas and hyper or hypo sensation and pain in others. I have B/B issues too. As time goes on my symptoms still don't really change. My symptoms are so much like so many others here and that's the reason that I stay. I think this may be relative to the fact of it being spinal cord injury, not sure. Maybe injury is injury, and the effects of it remains the same depending upon where on the cord the injury happens. But, I may be over simplifying things. I am very pleased to say though, and this is extremely important to me, that when I do slack off on my exercises and notice my body getting weaker, it does bounce back when I get back into an exercise routine again. I generally stop doing my exercises when I get sick and need all the energy and strength just to get around the house and to the bathroom. And at that point I really weaken. I know this happens to many of you. If I have the flu or any infection, it is really hard on my body. Hugs, Barbara A in Auburn CA -Original Message- From: Janice Nichols jan...@centurytel.net To: rj_ran...@yahoo.com; tmic-list@eskimo.com; Barbara Alma balmat...@aol.com Sent: Sun, Feb 14, 2010 9:23 am Subject: Re: [TMIC] TM and Pilates Looks like Randy and Barbara are living proof that TM, or whatever, is still not understood very well. Seems strange that they follow the symptoms for a while and then change some, but then isn't that what TM does? I am certainly not the same as I was when TM hit - yet I still follow the symptoms, a couple added and a couple disappeared.What a situation it puts us in, but at least we all have each other. Can't tell you what a difference it made to discover this website.Thanks guys. Janice From: Barbara Alma Sent: Saturday, February 13, 2010 11:39 PM To: rj_ran...@yahoo.com ; tmic-list@eskimo.com Subject: Re: [TMIC] TM and Pilates Hi Randy and all TMIC, I am another one who was originally told that I had TM and am now being told that I don't, and that's by the same doctor and another as well. I've never been talked to about MS though. I had only one attack, was paralyzed from waist to toes within 15 minutes, at lesion T8-10. I even went to 2 different hospitals, as I wanted a second opinion, both with a TM diagnosis. After about 3 yrs I was told by my first Neuro, who became my treating Neuro that I didn't have TM. He didn't know what caused the paralysis and no other information as to why. Not a spinal infarction or stroke, or anything else. I had trouble with my disability claim and he was the cause so I changed Neuro's a few of years later and she had MRI's done and told me the same thing. MRI's have come a long way and the lesion is not there any longer and they can't see any cause, like a bleed or anything. She looked for evidence of a bleed because she wanted to rule out the possibility of it happening again and couldn't find it. So guys, since I've had 2 Neuro's both tell me that I don't have TM, I really don't care. I'm sticking with it, and you are just stuck with me. I'm happy here, I get the support that I need, I give it when I can, and I'm not going anywhere. I really don't know what caused my problems, and I really don't care at this point. It is what it is. I've had this crap for over 10 years and it's not going away. I had TM symptoms and that's where I started, so I'm sticking with it. Hugs, Barbara A in Auburn CA -Original Message- From: rj_ran...@yahoo.com To: Grace M. grace...@gmail.com Cc: Janice Nichols jan...@centurytel.net; tmic-list@eskimo.com Sent: Sat, Feb 13, 2010 1:18 pm Subject: Re: [TMIC] TM and Pilates Janice its ok. I've actually been wondering if I should stay. I feel very awkward these days. I've been told more than once that I had all the textbook signs for ms and I did loose my left foot followed by my right leg then my bladder was told I had tm and went through the most
