Re: [TMIC]
If you look at the membership directory there are probably at least 100 people in most states. No one seems to have more than the others at a glance, but have to admit I didn't take the time to sit and count them all. From: Janice Nichols jan...@centurytel.net To: I.WHIDDETT i.whidd...@sky.com Cc: tmic-list@eskimo.com Sent: Tuesday, February 26, 2013 6:07 PM Subject: Re: [TMIC] I couldn’t really tell a leaning toward either sex. I guess TM isn’t particular. Janice From: I.WHIDDETT Sent: Tuesday, February 26, 2013 12:31 PM To: Janice Nichols Cc: mailto:tmic-list@eskimo.com Subject: Re: [TMIC] Thanks for that Janice. Was there a fairly even male/female divide? Iris UK Sent from my iPad On 26 Feb 2013, at 18:05, Janice Nichols jan...@centurytel.net wrote: Okay, fellow TM’ers, here is what I got from new responses. I was really hoping for something to jump out at me as far as same locations and a similar age for being attacked by TM. No such luck. For what it is worth, here it is: LOCATION AGE Washington – 7 12/13/19 - 5 people New York - 3 20’s - 2 people Michigan - 3 California - 3 30’s - 2 people Texas - 3 40’s - 10 people Missouri - 2 Virginia - 2 50’s - 10 people UK -- 2 60’s - 7 people The rest of the states responding were only “1” each 70’s - 2 people Obviously the older we get, the more susceptible we are to TM. Thanks to all of you for responding. Janice – Missouri
Re: [TMIC] Baclofen pump
I have to get it filled every 6 months. It was every three at first, but once my dose was stable they used a stronger concentration of Baclofen and moved it out. From: amy shultz mic...@hotmail.com To: lynnemye...@yahoo.com; TM group tmic-list@eskimo.com Sent: Saturday, February 23, 2013 9:22 PM Subject: RE: [TMIC] Baclofen pump OMG Lynn!! How often must you get it filled? I would pray to God that wasnt every month. I think my doctor said like maybe every 3 months but IDK, I couldnt afford that. Rob I hope you can get it and NOT have that cost involved!! Again best of luck!! Amy Shultz in Ohio Date: Fri, 22 Feb 2013 16:36:52 -0800 From: lynnemye...@yahoo.com Subject: Re: [TMIC] Baclofen pump To: robthe...@aol.com; tmic-list@eskimo.com Rob I have had a pump for quite a few years now, I use it to control clonus in my legs. The only down side I have found is the cost involved with getting the pump filled. Even with insurance my co-pay is over $600 every time I have to go in. From: Robert Pall robthe...@aol.com To: tmic-list@eskimo.com Sent: Tuesday, February 12, 2013 11:31 AM Subject: [TMIC] Baclofen pump I have just seen a new neuro who recommended the baclofen pump. He had me do a trial where he inserted a needle into my spine and injected a small dose of baclofen. Almost immediately I felt the banding in my legs improve and my walking was much better as well. I guess I am just worried about the downside if any of the pump. I would love to hear from people presently using the pump and hear their side of the story. Please keep in mind that I presently walk unassisted and drive (and swim). Ju7st want to make sure the upside is far better than the downside! All the best! Rob in New Jersey
Re: [TMIC] Baclofen pump
Yes paying for each refill is standard. They actually charge for in office surgery each time they access it to refill it. We have a private insurance through my husbands work and our co-pay is 20% each time. From: heyjude48...@aol.com heyjude48...@aol.com To: lynnemye...@yahoo.com Sent: Friday, February 22, 2013 9:09 PM Subject: Re: [TMIC] Baclofen pump Lynn, I had no idea we would have to pay each time the pump needed to be refilled. Is that a standard thing? What kind of insurance do you have? That really scares me because no one mentioned that aspect of it. Jude, Michigan In a message dated 2/22/2013 7:37:04 P.M. Eastern Standard Time, lynnemye...@yahoo.com writes: Rob I have had a pump for quite a few years now, I use it to control clonus in my legs. The only down side I have found is the cost involved with getting the pump filled. Even with insurance my co-pay is over $600 every time I have to go in. From: Robert Pall robthe...@aol.com To: tmic-list@eskimo.com Sent: Tuesday, February 12, 2013 11:31 AM Subject: [TMIC] Baclofen pump I have just seen a new neuro who recommended the baclofen pump. He had me do a trial where he inserted a needle into my spine and injected a small dose of baclofen. Almost immediately I felt the banding in my legs improve and my walking was much better as well. I guess I am just worried about the downside if any of the pump. I would love to hear from people presently using the pump and hear their side of the story. Please keep in mind that I presently walk unassisted and drive (and swim). Ju7st want to make sure the upside is far better than the downside! All the best! Rob in New Jersey
Re: [TMIC] Baclofen pump
Rob I have had a pump for quite a few years now, I use it to control clonus in my legs. The only down side I have found is the cost involved with getting the pump filled. Even with insurance my co-pay is over $600 every time I have to go in. From: Robert Pall robthe...@aol.com To: tmic-list@eskimo.com Sent: Tuesday, February 12, 2013 11:31 AM Subject: [TMIC] Baclofen pump I have just seen a new neuro who recommended the baclofen pump. He had me do a trial where he inserted a needle into my spine and injected a small dose of baclofen. Almost immediately I felt the banding in my legs improve and my walking was much better as well. I guess I am just worried about the downside if any of the pump. I would love to hear from people presently using the pump and hear their side of the story. Please keep in mind that I presently walk unassisted and drive (and swim). Ju7st want to make sure the upside is far better than the downside! All the best! Rob in New Jersey
Re: [TMIC] Looking for input.
Janet I think I am one of the odd ones out there who has more problems with the heat than I do with the cold weather. I always seem to have more issues with spasms and pain during the summer months, especially if we are having hot days with high humidity. Lynne --- On Mon, 6/25/12, Janet Dunn j.d...@shaw.ca wrote: From: Janet Dunn j.d...@shaw.ca Subject: [TMIC] Looking for input. To: tmic-list@eskimo.com Date: Monday, June 25, 2012, 1:29 AM Hello Everyone - not sure who is on here anymore. I have written in before, several times in fact, bemoaning the issues that I have with the cold cold winters that we get up here in northeastern BC. Now, it is the heat. My question is this: does excessive heat cause issues like the cold does? I have never noticed it before, but this year I quit taking Lyrica, and I cannot get the spasming in my leg to stop, no matter what I try. I am wondering if stopping the lyrica has contributed to the increase in pain, or if it is heat related? Thanks for your input. Janet
Re: [TMIC] Baclofen Question
Sorry I didn't respond sooner. I have had my pump for a few years now. It works very well to control the spasms without the brain fog I got from taking the baclofen orally. At this point it is regulated well enough that I only have to get it filled twice a year because they were able to use a stronger concentration of the baclofen. The only draw backs for me are the distance I have to travel to get it filled and the cost. With my insurance copay it still ends up costing me about $900 every six months. If you have any further questions please feel free to contact me anytime. Lynne --- On Sat, 11/12/11, Emily em...@telephonelady.com wrote: From: Emily em...@telephonelady.com Subject: [TMIC] Baclofen Question To: 'tmic' tmic-list@eskimo.com Date: Saturday, November 12, 2011, 1:27 PM Do any of you have the Baclofen pump? If so, does it help? How does it work? The neurologist is talking about my husband using this method of taking Baclofen because the spasticity in his legs is preventing him from being able to stand and is interfering with his physical therapy. Your input is appreciated. Emily Meyers
[TMIC] Fw: specialized handicap wheelchair and bicycles?
--- On Sat, 10/29/11, Joy Williams robnjoy2...@yahoo.com wrote: From: Joy Williams robnjoy2...@yahoo.com Subject: specialized handicap wheelchair and bicycles? To: lynnemye...@yahoo.com lynnemye...@yahoo.com Date: Saturday, October 29, 2011, 10:27 PM Hi. I guess I am a member of TMA, at least I get the newletter. I do try to read it ,but to be honest sometimes it takes me a while. I tend to read my Fibro ones faster. Iv'e been a member there for about 15 years. I started researching TM when my son became a patient. To make a long story short, it was only one year from diagnosis to death. I will share that maybe someday,but I don't like to bring others down. It can be a scary, devastating disorder. We should be as possitive for the new and hurting. as we can be ,,but honest also. Well anyway why I am writing. I was our local Big Brothers,Big Sisters -Thumb Area resale shop had outside! two specialize configured small bikes and another type one and I guess a wheelchair?? I should go get pictures and send . the shop is in Caro , in Tuscola county. I thought it was ashame to have these expensive items that someone could really use If anyone in michigan or anywhere really can use this childs set up I am having trouble with age of child it size and capabilities more so. so if you want pictures or some one wants more info this is the telephone number of the shop 989-673=6996 and mine is 989-6763-8691 my name is Joy williams Joy Williams
Re: [TMIC] shingles vaccine
I have gotten shingles three times in the last few years, and to say the least it is miserable. But on the recommendation of many doctors over the years I do not get any vaccines. My TM was also idiopathic and the reason I was given was because they do not know what caused my TM I should not take any risks that could cause my immune system to go into overdrive again. Lynne --- On Thu, 10/20/11, john snodgrass jcs...@yahoo.com wrote: From: john snodgrass jcs...@yahoo.com Subject: Re: [TMIC] shingles vaccine To: PAMELA S subers...@msn.com, pjv1...@chartermi.net pjv1...@chartermi.net, TMC Group tmic-list@eskimo.com Date: Thursday, October 20, 2011, 6:14 AM I have a weak mind, I hope all this information doesnt cause me to have shingles!! From: PAMELA S subers...@msn.com To: pjv1...@chartermi.net; TMC Group tmic-list@eskimo.com Sent: Thursday, October 20, 2011 1:37 AM Subject: RE: [TMIC] shingles vaccine You know...I'm not going to get this shot. But, shingles is what led to my mothers cardiomyapathy and congestive heart failure. Date: Wed, 19 Oct 2011 10:35:34 -0400 From: pjv1...@chartermi.net To: tmic-list@eskimo.com Subject: [TMIC] shingles vaccine Our local newspaper has a medical column in the Sunday edition by Dr. Anthony Komaroff. www.ask doctor k.com Sunday had a column titled shingles vaccine is a good idea for adults over 60. A healthy 65 year old woman asked - what is shingles and should I get the shingles vaccine. The doctor explained shingles and the vaccine. Here is a portion of the article. Getting the vaccine does not gurantee that you will noy get shingles. But it does reduce your chances by 50 percent or more. And it does an even better job of reducing your risk of postherpetic neuralgia. I've had patients worry that the vaccine itself could give them shingles. That's because the shingles vaccine is made with a weakened - not dead - form of the virus. And a tiny percentage of people do get either a shingles or chicken pox - like rash within a month or so of getting the vaccine. You may wonder if the risks associated with the shingles vaccine, though minimal, outweigh its benefits. And if we were only talking about shingles, you might be right. It's not pleasant, but most people get through shingles just fine. Postherpetic neuralgia is another story. It can last for months, even years, and be debilitating. The shingles vaccine can cut the risk of that happening by two thirds. And I'd say that tips the balance in favor getting the vaccine. I've voted with my feet. I got the vaccine, because I've seen too many of my patients suffer from postherpetic neuralgia. Chronic pain can disrupt a person's life (end of article) Jim,I think this is a question for a neurologist. Unfortunately, I haven't seen mine in three years so I cannot ask for you. I think it would be good of all our Tmers who are seeing a neuro to call and ask if the neuro votes yes or no for the vaccine and post the results for us. - Regarding the flu shot: I did not have a flu shot proir to my TM that was later lableled idiopathic - undetermined cause. I was also asked dozens of times during my hospitalization and rehab if I had had the flu shot thus determining that all medical personal thought the shot causes TM. Not so. Medical personnel asked if we had had the flu shot because they know the flu shot can cause various reactions and it is one of the many questions they ask a patient. The neuro who diagnosed me with TM asked if I had the flu shot during his first observation of me. I saw him for five years post TM and learned that he, his wife, and children received the flu shot annually. I asked my PCP in September why he didn't ask me if I wanted a flu shot. He said, Do you? I questioned if he takes one and he said he did not because he is not prone to getting the flu and he will not push them on his patients. That was the best answer I've received yet. I am not getting the flu shot. ---Patti - Michigan
Re: [TMIC] Pyrrhic Victory?
Not sure about your area but where I live our local high school has a commuinity service requirement for the kids to graduate. That may be another place to check for help with no cost involved. Lynne --- On Sat, 10/8/11, Janice Nichols jan...@centurytel.net wrote: From: Janice Nichols jan...@centurytel.net Subject: Re: [TMIC] Pyrrhic Victory? To: pjv1...@chartermi.net, PAMELA S subers...@msn.com Cc: jcs...@yahoo.com, a...@artfarm.com, TMC Group tmic-list@eskimo.com Date: Saturday, October 8, 2011, 11:03 AM Excellent idea - the churches are always looking for people they can help. Janice From: pjv1...@chartermi.net Sent: Saturday, October 08, 2011 8:30 AM To: PAMELA S Cc: jcs...@yahoo.com ; a...@artfarm.com ; TMC Group Subject: RE: [TMIC] Pyrrhic Victory? I have those same thoughts when I read the things Akua goes thru day to day. I remember the first time I went grocery shopping after TM. My 76 year old (at the time) Mom took me and a 9 year old boy carried the bags from the car to the house. I would do your grocery shopping if I lived near you. Akua, have you contacted a local church? Most people don't know where to find an individual who needs a helping hand. See if you local paper would start a column of people in need. Not financial, but physical labor needs. The paper might run it in their want ad columns free of charge to the person seeking help as a charitable endavor. Patti - Michigan On Thu, Oct 6, 2011 at 8:38 PM, PAMELA S wrote: No kidding! Akua; if I lived close by I would vacuum your floor. I can do that now. Pam ___ Date: Thu, 6 Oct 2011 04:39:41 -0700 From: jcs...@yahoo.com Subject: Re: [TMIC] Pyrrhic Victory? To: a...@artfarm.com; tmic-list@eskimo.com it is a sad thing that this is done in regulated areas as well as unregulated areas in our lives. this is the very mindset that has brought our country to the embarrassing financial situation we are in.waste,fraud,,greed greed greed. and we the people suffer loss of what would be good service because of it,and in the economical way we have to go we need service. service is costly but if it is a good service and done with dignity it doesn't matter what type of service,it adds quality to all our lives. the Christian bible has a book tagged proverbs and it is full of service suggestions that win every single time. Prosper and live long Akua,,I understand your struggle. Be it implied,imposed,self imposed,or whatever a struggle is a struggle and everyone doesn't look for the good of his fellow citizen. spread some honey out when ever you can,,it attracts worker bees. crap just attracts biting flies. God knows i have had the flies! ___ From: Akua a...@artfarm.com To: tmic-list@eskimo.com Sent: Thursday, October 6, 2011 1:32 AM Subject: [TMIC] Pyrrhic Victory? I have an aide come once a week for two hours. I would like more time and more help as those two hours are spent grocery shopping, so I get no help around the house. But I can't afford more. The Home Health Care agency charges $25 an hour for her and I was fortunate to be granted a subsidy from United Way, so I only have to pay half. But that's still $25 a week additional for groceries. They had a nurse come every six months. This I never understood, as she either harassed my aide and made me lose part of the precious two hours as she asked inane questions, or she came and asked me to show her my care plan. The last time the nurse was here in the spring, she insulted and threatened me. I swore she would not enter my house again and I wrote a letter about what occurred, but decided against sending it. Two weeks ago the nurse called me, and in her usual rude and cavalier way,left a message telling me told me she would be over the next day. I called and said would not be available. Then i called the agency and said that I did not want anymore dealings with this person and could they please find someone else to send. The head of the agency said they only had one person to do this. I said i didn't understand why this had to be done... why was a nurse necessary? I reminded her that i had used their services for 3 years now, that i was very happy with my aide, but was not going to voluntarily submit myself to insult and distress. The head went on to try to persuade me/dissuade me by telling me that their one other nurse covered another territory. To which i had nothing to say. This was their requirement and it made no sense to me. This week she called me and left a message saying call her. I really dislike messages that don't have information and when i returned the call-- 90 minutes later, she was to be out of the office for the next two days. I was directed to the second in command who said that i was going to be reclassified. Reclassified? I said i have one person,
Re: [TMIC] Hello
Dalton, Very sorry to hear about your loss. It makes this disease even harder to deal with when it takes something away from you that you love. It has been almost 8 years for me since I had to quit nursing, and I still miss it every day. I hope you are able to find comfort in your writtings and that you find other ways to fulfill yourself. Lynne --- On Thu, 6/9/11, Dalton Garis malugss...@gmail.com wrote: From: Dalton Garis malugss...@gmail.com Subject: Re: [TMIC] Hello To: Carol E snow121...@hotmail.com, tmic-list@eskimo.com Date: Thursday, June 9, 2011, 8:17 AM Hi Carol; This is Dalton. I just got terminated today. It seems I couldn't overcome the pull of TM, and my classroom work—that of which I was most proud—suffered. I have three months' notice. Last year they lightened the load and I did OK, but they said I worked too little. This year I taught three courses, teaching every day, and the pain, fatigue and med-head just made every day agony. It showed and the students complained. So, that's it. Up till now they have been very nice. But they don't keep persons around who can't pull the whole load. Not the way I wanted to go out. Thanks, Dalton From: Carol E snow121...@hotmail.com Date: Tue, 7 Jun 2011 09:43:34 -0500 To: tmic-list@eskimo.com Subject: [TMIC] Hello Resent-From: tmic-list@eskimo.com Resent-Date: Tue, 7 Jun 2011 07:44:27 -0700 Just testing to see if I am still on the list. I'm not receiving messages. Carol Worrying does not empty tomorrow of its troubles; It empties today of its strengths.
Re: [TMIC] OT-New Granddaughter
Congrats to all, our first grand son is on his way. Due May 27th. --- On Wed, 1/12/11, j.d...@shaw.ca j.d...@shaw.ca wrote: From: j.d...@shaw.ca j.d...@shaw.ca Subject: Re: [TMIC] OT-New Granddaughter To: Butcher, Bernie (SFS) bernie.butc...@honeywell.com, Cody c...@austin.rr.com, TMIC tmic-list@eskimo.com Date: Wednesday, January 12, 2011, 1:29 AM Congratulations to all of you. I got to join the club on November 24 2010 My first grandbaby - a boy - Quentin. Stole my heart, he did! Janet - Original Message - From: Butcher, Bernie (SFS) To: Cody ; TMIC Sent: Tuesday, January 11, 2011 2:03 PM Subject: RE: [TMIC] OT-New Granddaughter I too am now a grandfather! 8/19/10 Colin Bernard BERNARD BUTCHER Honeywell Engineering 516-577-5868 From: Cody [mailto:c...@austin.rr.com] Sent: Tuesday, January 11, 2011 3:42 PM To: TMIC Subject: [TMIC] OT-New Granddaughter Holding my hand is my new Granddaughter Kaylee Rayann born 12-30-2010 6.1lbs.Cody in Austin
Re: [TMIC] REHAB
Kevin, I know first hand after years of working in nursing homes, first as a nurses aide then as an RN that falls are the biggest issue they all have. It is not that they don't care if people fall and get hurt, but with state regulations, atleast here in Michigan, it is very difficult to prevent the falls. According to our state guide lines they all have the right to fall. Preventing falls without the use of any type of restraint was one of the most time consuming and difficult parts of my job. Please understand that not all nursing homes are bad, and that alot of the people who work in them care alot about what happens to the people staying there, but alot of times their hands are tied. Lynne --- On Wed, 1/5/11, Janice Nichols jan...@centurytel.net wrote: From: Janice Nichols jan...@centurytel.net Subject: Re: [TMIC] REHAB To: Kevin Wolfthal wolft...@optonline.net, Akua a...@artfarm.com, tmic-list@eskimo.com Date: Wednesday, January 5, 2011, 12:44 PM Kevin, you did all you could for your mom - don't beat yourself up about it. I would imagine there was I shift that was sloppy with patients and the others were pretty good. This was something you could not help. Janice -Original Message- From: Kevin Wolfthal Sent: Tuesday, January 04, 2011 3:36 AM To: Akua ; tmic-list@eskimo.com Subject: Re: [TMIC] REHAB I am furious when I think about how my Mother was treated in rehab after her stroke. She was allowed to fall out of her wheelchair at least 3 times that I know of. They refused to belt her in the chair even though she was paralyzed on one side. When I called a nurse once to ask how my Mom was doing she said: why are you worried about her, she's old I am NOT kidding! When my Mom was brought home for hospice, she was black and blue all over. The hospice nurse was wondering why, so I told her, because the rehab let her fall out of her wheelchair three times. My Mom passed away on her one day back home. I will do anything I can to avoid that kind of care. I wish I could have done more for my Mom. Kevin
Re: [TMIC] question
I also take Tegretol, it helps me the most with my banding. Was suprised with the amount of relief I got within a short time after starting it. Lynne --- On Wed, 12/8/10, Bernie bpe...@austin.rr.com wrote: From: Bernie bpe...@austin.rr.com Subject: Re: [TMIC] question To: Dalton Garis malugss...@gmail.com, TMIC tmic-list@eskimo.com Date: Wednesday, December 8, 2010, 4:30 AM Hey Dalton, Shot in the dark, but my doctors put me on Tegratol. Now it's original use is for seizures, but one of the side effects is it does sometimes stop the electrical, lightning bolt sensations. I was on it for a while, but started having seizures; my body couldn't metabolize the Tegratol correctly so it caused me to have seizures. It is a rare occurrence, but I seem to get them all...lol. But while I was taking it, it did help a lot with the 'electrical' impulses and shocks going through me. Might ask your doctor about it... Namaste, Bernie in Texas On 12/8/2010 2:59 AM, Dalton Garis wrote: May I break in with a question of my own? I am having a great deal of trouble with cramping and what I just learned is called hypertonis, which is too much muscle tone and willingness to contract, and the feedback loop to the brain that would tell the muscle not to contract being damaged by the TM in my brainstem, where the lesion was actually found. I can't continue to function with this hypertonis, which feels as if I am being electrocuted from the base of my spine, all the way down my legs and arms, so that it hurts a lot to move at all, or even talk. Only by being completely still and relaxed does this pain subside. Have any of you had experience with this? And if so, can you recommend a medication which might be useful? Thanks, and hope to hear back soon, Dalton On Dec 8, 2010, at 12:03 PM, Barbara Alma wrote: Hi Rob, After having trouble with what I thought was my leg due to 2 DVT's and poor circulation, I found out that I am not totally bone on bone yet, but there is a lot of arthritis, which means I could get the replacement. I'm only 59, so figure if I can put it off for awhile, I will. As much as I walk, I'll probably never wear it out. I was actually on schedule for a knee replacement last year when I asked to see a physical therapist in order to best improve the strength in my body so I could get through the rehab in the best way possible. The therapist told me that the knee is no walk in the park. It is extremely painful, after the surgery, but especially the rehab. I don't understand what you mean about rehab differently. From what I understand, and I really didn't go into it all the way, you have exercises and walking. He told me that a very painful part is straightening the knee, as it will want to be bent to be in less pain, but not good since you develop scar tissue very quickly and if not careful, you will not be able to straighten it fully. I had a couple of visits and from the exercises that I was doing for my legs I no longer had the pain that I was having. At the time I also was having a lot of pain with my shoulder over for a year and a half at that point, so knew it would be extra painful on the shoulder. I use canadian crutches or a rolling walker to get around, and the orthopedic surgeon says that I walk on my shoulders, lol. I had rotator cuff surgery and a bone spur removed two months ago and am no longer in pain there, so when I really need the knee, I'll hopefully be in better shape. Good luck Rob, just thought I'd share my small bit of knowledge. Hugs, Barbara A in Auburn CA -Original Message- From: Robert Pall rp...@neillsupply.com To: tmic-list tmic-list@eskimo.com Sent: Tue, Dec 7, 2010 8:43 am Subject: [TMIC] question Have any of you gotten replacement hips or knees…..I think I may need a new knee and I was wondering….. if you have no feeling (other than pain) how do you rehab…surely you cannot do it the normal rehab way? Thanks Rob in New Jersey No virus found in this message. Checked by AVG - www.avg.com Version: 10.0.1170 / Virus Database: 426/3303 - Release Date: 12/07/10
Re: [TMIC] Shingles Vaccine
My physicians have told me since the begining of my TM not to get any vaccines. They are all afraid it will put my immune system into over drive again and cause a flare up or possible recurrance. So none for me, even though I have had shingles twice since getting TM and they are definately not fun. Lynne --- On Thu, 11/11/10, Carol E snow121...@hotmail.com wrote: From: Carol E snow121...@hotmail.com Subject: [TMIC] Shingles Vaccine To: tmic-list@eskimo.com Date: Thursday, November 11, 2010, 6:29 PM What every ones opinion on getting the vaccine for shingles? I'm 60 and last week for my annual physical, my doctor recommended that I get the shingles vaccine. I didn't get, because I wanted to ask the TM group and the medical people on the list. Carol in Addison, IL
RE: [TMIC] Anyone else in Hawaii
Make sure you are registered on the TMIC website. That will give them the information they need when they do the update. --- On Fri, 10/1/10, Emily em...@telephonelady.com wrote: From: Emily em...@telephonelady.com Subject: RE: [TMIC] Anyone else in Hawaii To: 'Patricia Cooley' patticoole...@gmail.com, kimharrison...@comcast.net, tmic-list@eskimo.com Cc: tmic-list@eskimo.com Date: Friday, October 1, 2010, 10:19 AM To whoever is in charge of maintaining the directory….we are new….please add my husband’s name to the directory: John Meyers 37 Vandevere Lane Columbus, NJ 08022 609-324-3724 10/14/40 Thanks! From: Patricia Cooley [mailto:patticoole...@gmail.com] Sent: Friday, October 01, 2010 9:53 AM To: kimharrison...@comcast.net; tmic-list@eskimo.com Cc: tmic-list@eskimo.com Subject: RE: [TMIC] Anyone else in Hawaii YESTERDAY, I SCANNED THE PAGE IN THE DIRECTORY WHICH LISTED THE MEMBERS IN HAWAII AND SENT IT ON TO JAMES. I ALSO MENTIONED THE DIRECTORY IS SEVERAL YEARS OLD AND MAY NOT BE UP-TO-DATE. I UNDERSTAND A NEW DIRECTORY IS IN THE WORKS. I HOPE IT HELPS TO PUT HIM IN TOUCH WITH OTHER TMers. PATTI - WISCONSIN From: kimharrison...@comcast.net [mailto:kimharrison...@comcast.net] Sent: Thursday, September 30, 2010 8:27 PM To: tmic-list@eskimo.com Cc: tmic-list@eskimo.com Subject: Re: [TMIC] Anyone else in Hawaii Looks like James is new to the group, I cant figure it out but can someone please send him the link on how to find the support groups and where they are? I looked on the TM site but Hawaii was not listed United States Alaska TM Support Group Arkansas TM Support Group Arizona TM Support Group California TM Support Group Colorado TM Support Group Florida TM Support Group GA - The CSRA TM Support Group Idaho TM Support Group Illinois Support Group Kentucky TM Support Group Louisiana TM Support Group Maine TM Support Group Maryland/DC TM Support Group Massachusetts TM Support Group Michigan TM Support Group Minnesota TM Support Group Mississippi TM Support Group Missouri TM Support Group New England Tri-State Area Support Group New Jersey TM Support Group New York TM Support Group Western New York area TM Support Group North Carolina TM Support Group Ohio TM Support Group Pacific Northwest (Washington, Oregon, Alaska, Idaho and Britsh Columbia) TM Support Group Pennsylvania TM Support Group SC - The CSRA TM Support Group Tennessee TM Support Group Texas Tranverse Myelitis Coalition Virginia TM Support Group Wisconsin TM Support Gro - Original Message - From: Deborah Nord Capen dca...@earthlink.net To: Janice Nichols jan...@centurytel.net, James Berg molokai...@gmail.com, tmic-list@eskimo.com Sent: Thursday, September 30, 2010 12:31:54 AM Subject: RE: [TMIC] Anyone else in Hawaii According to the directory, there are about a half dozen TMA members in Hawaii . From: Janice Nichols [mailto:jan...@centurytel.net] Sent: Wednesday, September 29, 2010 8:18 PM To: James Berg; tmic-list@eskimo.com Subject: Re: [TMIC] Anyone else in Hawaii As far as I remember, I think you are it. We have members from Holland , Australia , Brazil , Abu Dhabi , West Coast, East Coast, and in between. But, have not heard from anyone in Hawaii . Remember, TM is extremely rare. Good Luck though. Janice From: James Berg Sent: Wednesday, September 29, 2010 5:04 PM To: tmic-list@eskimo.com Subject: [TMIC] Anyone else in Hawaii I would like to know if I am the only person with TM in Hawaii . I would like to correspond with TM patients in my state.
[TMIC] Michigan Support Group Meeting
Annual Michigan TM Support Group Meeting will be held on Saturday October 9th at 1pm at the World Buffet on Saginaw Hwy. in Lansing. This location is centrally located for most of our members. If you are interested in attending please let me know by October 1st. Thanks, Lynne 269-420-4144
Re: [TMIC] arghhh!!!!!!!
The MagCitrate is also great for digestion. --- On Wed, 8/11/10, randy rankin rj_ran...@yahoo.com wrote: From: randy rankin rj_ran...@yahoo.com Subject: Re: [TMIC] arghhh!!! To: Janet Dunn j.d...@shaw.ca, john snodgrass jcs...@yahoo.com, transverse myelitis tmic-list@eskimo.com Date: Wednesday, August 11, 2010, 11:37 AM Baclofen was a big turning point for me - didn't know about MgCitrate - got to check that out From: Janet Dunn j.d...@shaw.ca To: randy rankin rj_ran...@yahoo.com; john snodgrass jcs...@yahoo.com; transverse myelitis tmic-list@eskimo.com Sent: Wed, August 11, 2010 2:44:06 AM Subject: RE: [TMIC] arghhh!!! Hey John, Randy, I’ve been there too. Besides Percodan and Baclofen, I also use a good healthy dose of Magnesium Citrate. About 400 – 500 mgs – it is a natural muscle relaxant. And it helps with the sleep issue. Gotta love TM. Gotta. NOT! Janet From: randy rankin [mailto:rj_ran...@yahoo.com] Sent: August 10, 2010 9:48 PM To: john snodgrass; transverse myelitis Subject: Re: [TMIC] arghhh!!! Hey John, been there - understand what you're going through. I'm not sure what will work for you. mix of meds and p.t. (eventhough my first neuro said p.t. wouldn't do any good) made a big difference but it took several years of constant determination. From: john snodgrass jcs...@yahoo.com To: transverse myelitis tmic-list@eskimo.com Sent: Tue, August 10, 2010 11:13:59 PM Subject: [TMIC] arghhh!!! bed at 8 up at 10 spasm city! more pain meds. now just burning legs. gotta be up at 4. slept 2.5 hours last night. whats this? getting sleepy. good.
Re: [TMIC] pause from the cause
Yes have tried it, it is one of the many meds that I react to. Am having surgery on my wrist on Sept. 15 and after lenghlty discussions with doctors and anesthesiology am going to be recovering with only regular tylenol for pain. Not looking forward to it at all. --- On Tue, 8/10/10, Akua a...@artfarm.com wrote: From: Akua a...@artfarm.com Subject: Re: [TMIC] pause from the cause To: lynne myers lynnemye...@yahoo.com Date: Tuesday, August 10, 2010, 5:58 PM Re: [TMIC] pause from the causeHave you tried naltrexone low dose naltrexone helps me a lot! I gave up pain meds while in the hospital because days disappeared and wrestled with great pain until i found LDN. Cheryl, I understand what you are saying about the pain. I am also unable to take any pain medication, so have just been trying to learn to live with it, which is more successful some days than others. Lynne --- On Sat, 8/7/10, Janice Nichols jan...@centurytel.net wrote: From: Janice Nichols jan...@centurytel.net Subject: Re: [TMIC] pause from the cause To: rn11...@yahoo.com Cc: tmic-list@eskimo.com Date: Saturday, August 7, 2010, 7:19 PM Seems like there should be something you can do. Hope this is short lived. Janice From: rn11...@yahoo.com Sent: Friday, August 06, 2010 8:52 PM To: Janice Nichols Cc: tmic-list@eskimo.com Subject: Re: [TMIC] pause from the cause --
Re: [TMIC] pause from the cause
Cheryl, I understand what you are saying about the pain. I am also unable to take any pain medication, so have just been trying to learn to live with it, which is more successful some days than others. Lynne --- On Sat, 8/7/10, Janice Nichols jan...@centurytel.net wrote: From: Janice Nichols jan...@centurytel.net Subject: Re: [TMIC] pause from the cause To: rn11...@yahoo.com Cc: tmic-list@eskimo.com Date: Saturday, August 7, 2010, 7:19 PM Seems like there should be something you can do. Hope this is short lived. Janice From: rn11...@yahoo.com Sent: Friday, August 06, 2010 8:52 PM To: Janice Nichols Cc: tmic-list@eskimo.com Subject: Re: [TMIC] pause from the cause
Re: [TMIC] Fw: Clorox vs Peroxide.....this is good
Found most of the uses interesting, but as a nurse I have to tell you I would no sooner use peroxide on a wound than bleach. Peroxide can cause damage to surrounding healthy tissues and actually slow healing. For me good old soap and water work the best. --- On Tue, 7/27/10, Janice Nichols jan...@centurytel.net wrote: From: Janice Nichols jan...@centurytel.net Subject: [TMIC] Fw: Clorox vs Peroxide.this is good To: tmic-list@eskimo.com Date: Tuesday, July 27, 2010, 12:02 PM I found this very interesting - hope you do too. Janice - Original Message - Clorox vs Peroxide VERY interesting and inexpensive. This was written by Becky Ransey of Indiana (a doctor's Wife), and I want to share it with you. She was over recently for coffee and smelled the bleach I was using to clean my toilet and counter tops. This is what she told me. 'I would like to tell you of the benefits of that Plain little ole bottle of 3% peroxide you can get for under $1.00 at any drug store. What does bleach cost? My husband has been in the medical field for over 36 years, And most doctors don't tell you about peroxide. Have you Ever smelled bleach in a doctor's office? NO!!! Why? Because it smells, and it is not healthy! Ask the nurses who work in the doctor's offices, and ask them if they use bleach at home. They are wiser and know better! Did you also know bleach was invented in the late 40's? It's chlorine, folks! And it was used to kill our Troops. Peroxide was invented during WWI in the 20's. It was used to save and help cleanse the needs of our troops and hospitals. Please think about this: 1. Take one capful (the little white cap that comes with the bottle) and hold in your mouth for 10 minutes daily, then spit it out. (I do it when I bathe.) No more canker sores, and your teeth will be whiter without expensive pastes. Use it instead of mouthwash. 2. Let your toothbrushes soak in a cup of peroxide to keep them free of germs. 3. Clean your counters and table tops with peroxide to kill germs and leave a fresh smell. Simply put a little on your dishrag when you wipe, or spray it on the counters. 4. After rinsing off your wooden cutting board, pour peroxide on it to kill salmonella and other bacteria. 5. I had fungus on my feet for years until I sprayed a 50/50 mixture of peroxide and water on them (especially the toes) every night and let dry. 6. Soak any infections or cuts in 3% peroxide for five to ten minutes several times a day. My husband has seen gangrene that would not heal with any medicine but was healed by soaking in peroxide. 7. Fill a spray bottle with a 50/50 mixture of peroxide and Water and keep it in every bathroom to disinfect without Harming your septic system like bleach or most other Disinfectants will. 8. Tilt your head back and spray into nostrils with your 50/50 mixture whenever you have a cold, plugged sinus. It will bubble and help to kill the bacteria. Hold for a few minutes, and then blow your nose into a tissue. 9. If you have a terrible toothache and cannot get to a dentist right away, put a capful of 3% peroxide into your mouth and hold it for ten minutes several times a day. The pain will lessen greatly. 10. And of course, if you like a natural look to your hair, spray the 50/50 solution on your wet hair after a shower and comb it through. You will not have the peroxide-burnt blonde hair like the hair dye packages but more natural highlights if your hair is a light brown, reddish, or dirty blonde. It also lightens gradually, so it's not a drastic change. 11. Put half a bottle of peroxide in your bath to help get rid of boils, fungus, or other skin infections. 12. You can also add a cup of peroxide instead of bleach to a load of whites in your laundry to whiten them. If there is blood on clothing, pour it directly on the soiled spot. Let it sit for a minute, then rub it and rinse with cold water. Repeat if necessary. 13. I use peroxide to clean my mirrors. There is no smearing, which is why I love it so much for this. 14. Another place it's great is in the bathroom, if someone has been careless has wet on the floor around the toilet it's begun to smell of urine. Just put some peroxide in a spray bottle spray. In the blink of any eye all the smell will be gone the bacteria eliminated! I could go on and on. It is a little brown bottle no home should be without! With prices of most necessities rising, I'm glad there's a way to save tons of money in such a simple, healthy manner! ' This information really woke me up. I hope you gain something from it, too. Pass it on! Clorox vs peroxide VERY interesting and inexpensive =
Re: [TMIC] Where TM struck
I have lived in Michigan all my life. Have lived in fairly small towns the entire time although there were two factorys within a few blocks of where I grew up. Lynne --- On Wed, 5/19/10, kimr1999 kimr1...@bellsouth.net wrote: From: kimr1999 kimr1...@bellsouth.net Subject: Re: [TMIC] Where TM struck To: jan...@centurytel.net, tmic-list@eskimo.com, ladyno...@aol.com Date: Wednesday, May 19, 2010, 7:23 PM I live in Atlanta, GA was on business trip in Dallas, TX when TM struck in 04 --- On Wed, 5/19/10, ladyno...@aol.com ladyno...@aol.com wrote: From: ladyno...@aol.com ladyno...@aol.com Subject: Re: [TMIC] Where TM struck To: jan...@centurytel.net, tmic-list@eskimo.com Date: Wednesday, May 19, 2010, 7:09 PM I live in Michigan, but I was in Minnesota, attending a wedding, when my TM struck Have a Blessed Day, Naomi -Original Message- From: Janice Nichols jan...@centurytel.net To: tmic-list@eskimo.com Sent: Tue, May 18, 2010 12:04 am Subject: [TMIC] Where TM struck I did not get many replies to my asking where people were living when TM struck them. Actually, it was really scattered. Sorry. Janice
Re: [TMIC] baclofen pump
I was on the max dosage of oral Baclofen before the pump and was not getting relief from the spasms, just felt like a had major brain fog all the time. --- On Wed, 5/19/10, Janice Nichols jan...@centurytel.net wrote: From: Janice Nichols jan...@centurytel.net Subject: Re: [TMIC] baclofen pump To: lynne myers lynnemye...@yahoo.com, dennis rabalais dennis_rabalais20...@yahoo.com, tmic tmic-list@eskimo.com Date: Wednesday, May 19, 2010, 12:08 PM I have been very pleased with the amount of baclofen I take in pill form. It really has helped with knee-jerking spasms. Janice From: lynne myers Sent: Wednesday, May 19, 2010 7:44 AM To: dennis rabalais ; tmic Subject: Re: [TMIC] baclofen pump I have had a Baclofen pump for a 3 years now. Although it does relieve some of my spasms and clonus they are not able to turn the dose up high enough to get the desired relief with out affecting my bladder function. I wish before I had it inserted I had checked to see what it was going to cost me each time I get it refilled. Even with insurance coverage we were shocked at the copay amount. I will be having the pump removed when it is time to replace it and go back on the oral Baclofen. Lynne --- On Tue, 5/18/10, dennis rabalais dennis_rabalais20...@yahoo.com wrote: From: dennis rabalais dennis_rabalais20...@yahoo.com Subject: [TMIC] baclofen pump To: tmic-list@eskimo.com Date: Tuesday, May 18, 2010, 3:57 PM hi my name is dennis. i have had tm since 2002. i am getting a baclofen pump put in. has anyone in this group have had one? if so, has it worked? i am a little bit nervous. dennis, texas
Re: [TMIC] baclofen pump
I have had a Baclofen pump for a 3 years now. Although it does relieve some of my spasms and clonus they are not able to turn the dose up high enough to get the desired relief with out affecting my bladder function. I wish before I had it inserted I had checked to see what it was going to cost me each time I get it refilled. Even with insurance coverage we were shocked at the copay amount. I will be having the pump removed when it is time to replace it and go back on the oral Baclofen. Lynne --- On Tue, 5/18/10, dennis rabalais dennis_rabalais20...@yahoo.com wrote: From: dennis rabalais dennis_rabalais20...@yahoo.com Subject: [TMIC] baclofen pump To: tmic-list@eskimo.com Date: Tuesday, May 18, 2010, 3:57 PM hi my name is dennis. i have had tm since 2002. i am getting a baclofen pump put in. has anyone in this group have had one? if so, has it worked? i am a little bit nervous. dennis, texas
Re: [TMIC] shingles
The way I understand it autoimmune disorders are caused when your immune system responds to a virus but ends up attacking healthy body tissues as well. --- On Sun, 3/14/10, Laura Beaudin laura.beau...@gmail.com wrote: From: Laura Beaudin laura.beau...@gmail.com Subject: Re: [TMIC] shingles To: lynne myers lynnemye...@yahoo.com Cc: tmic tmic-list@eskimo.com Date: Sunday, March 14, 2010, 2:26 PM How would your system over react? I'm usually the first to say no to vaccines, but where shingles are concerned, doesn't this become a quality of life issue? I'd probably risk another relapse over the idea of getting shingles. Laura You can easily judge the character of a man by how he treats those who can do nothing for him. -James D. Miles- http://www.bananga.com ...empowering ourselves! On Practical-Homeschooling: 10 Free or Inexpensive Homeschool Options http://www.practical-homeschooling.org On 14/03/2010 5:54 AM, lynne myers wrote: I have had Shingles twice since TM onset. Mine were only slightly painful and very itchy. My physicians will not give me the shingles vaccine, or any other vaccine for that matter. They fear it may make my immune system over react again. Lynne --- On *Sat, 3/13/10, bobby jim /elbobber...@earthlink.net/* wrote: From: bobby jim elbobber...@earthlink.net Subject: Re: [TMIC] shingles To: Jan Hargrove jmh1...@sbcglobal.net, Betty Shaffer vasso...@gmail.com, tmic-list@eskimo.com Date: Saturday, March 13, 2010, 7:51 PM They now have shingles vaccines. I've had one already. BobbyJim - Original Message - *From:* Jan Hargrove http://us.mc534.mail.yahoo.com/mc/compose?to=jmh1...@sbcglobal.net *To:* Betty Shaffer http://us.mc534.mail.yahoo.com/mc/compose?to=vasso...@gmail.com ; tmic-list@eskimo.com http://us.mc534.mail.yahoo.com/mc/compose?to=tmic-l...@eskimo.com *Sent:* Saturday, March 13, 2010 13:20 *Subject:* Re: [TMIC] shingles I had shingles soon after the onset of tmnot uncommonluckily for me, the shingles were on my upper legs and bottom which were still totally numb!! janh *From:* Betty Shaffer vasso...@gmail.com http://us.mc534.mail.yahoo.com/mc/compose?to=vasso...@gmail.com *To:* tmic-list@eskimo.com http://us.mc534.mail.yahoo.com/mc/compose?to=tmic-l...@eskimo.com *Sent:* Sat, March 13, 2010 11:45:05 AM *Subject:* [TMIC] shingles Has anybody out there had shingles? If so, how did it affect you? The doctor was puzzled, saying my rash looked like shingles, but the pain description didn't sound typical. I have jolts of pain rather thanm deep, constant pain. The rash is on my waist. I wonder if T.M. makes things different. My face is quite flushed. After consulting another doctor who confirmed shingles, the first one prescribed medication. Betty in Oregon
Re: [TMIC] shingles
Yes I will probably get them again, I have a course of Valtrex on hand at all times so I can start to treat them as soon as they pop up and don't have to wait to get into the doctor first. Lynne --- On Sun, 3/14/10, Janice Nichols jan...@centurytel.net wrote:
Re: [TMIC] shingles
I have had Shingles twice since TM onset. Mine were only slightly painful and
very itchy. My physicians will not give me the shingles vaccine, or any other
vaccine for that matter.
They fear it may make my immune system over react again.
Lynne
--- On Sat, 3/13/10, bobby jim elbobber...@earthlink.net wrote:
From: bobby jim elbobber...@earthlink.net
Subject: Re: [TMIC] shingles
To: Jan Hargrove jmh1...@sbcglobal.net, Betty Shaffer
vasso...@gmail.com, tmic-list@eskimo.com
Date: Saturday, March 13, 2010, 7:51 PM
#yiv2010762716 DIV {
MARGIN:0px;}
They now have shingles vaccines. I've had one already.
BobbyJim
- Original Message -
From: Jan Hargrove
To: Betty Shaffer ; tmic-list@eskimo.com
Sent: Saturday, March 13, 2010 13:20
Subject: Re: [TMIC] shingles
I had shingles soon after the onset of tmnot uncommonluckily
for me, the shingles were on my upper legs and bottom which were still
totally numb!!
janh
From: Betty Shaffer vasso...@gmail.com
To: tmic-list@eskimo.com
Sent: Sat, March 13, 2010 11:45:05 AM
Subject: [TMIC] shingles
Has anybody out there had shingles? If so, how did it affect you?
The doctor was puzzled, saying my rash looked like shingles, but the pain
description didn't sound typical. I have jolts of pain rather thanm deep,
constant pain. The rash is on my waist. I wonder if T.M. makes things
different. My face is quite flushed.
After consulting another doctor who confirmed shingles, the first one
prescribed medication.
Betty in Oregon
Re: [TMIC] Lesions and Myelin Regeneration
In my original post I did not state that there would be no imporvement after
the two year mark. With TM most of the improvements take place in the first
two years. After that any improvement is slower and less noticable. I would
not want anyone to give up hope. Our TM website founder Jim Lubin is actually
not able to move a finger after being paralized for years.
--- On Wed, 3/10/10, Janice Nichols jan...@centurytel.net wrote:
From: Janice Nichols jan...@centurytel.net
Subject: Re: [TMIC] Lesions and Myelin Regeneration
To: Robert Pall rp...@neillsupply.com, Jan Hargrove
jmh1...@sbcglobal.net, lynne myers lynnemye...@yahoo.com, tmic
tmic-list@eskimo.com
Date: Wednesday, March 10, 2010, 9:33 PM
#yiv467152389 DIV {
MARGIN:0px;}
Wasn't going to chime in any more on this subject, but Rob, you really have
nailed the mindset we all need to have to continue to live our lives and show
improvement. Without it, we are lost to this #!*%# disease!
Janice
From: Robert Pall
Sent: Wednesday, March 10, 2010 10:19 AM
To: Jan Hargrove ; lynne myers ; tmic
Subject: RE: [TMIC] Lesions and Myelin Regeneration
As someone who has had TM for close to 13 years I thought I too would chime
in on the subject. After 12 years I had a new MRI performed which showed the
lesion exactly as it appeared initially (first spotted in my 3rd MRI at the
onset). While the vast majority of my improvement took place in year one I
would agree with Jan that improvement even though small has continued the past
12 years. I walk,drive and exercise more efficiently than I ever could. I have
found it vital to maintain an exercise regimen in order to not let the rest of
my health go downhill. I swim 3-4 times a week, watch my diet (helps my bowel
problems), have Activa every night...it really works!
I beseech all of you to not give up...I no longer am waiting for the cure
that will make me the way I wasI was 50 when TM hit me and I doubt a cure
is in my future. That being said I do take meds,presently the meds I take
for TM include Lyrica,Cymbata and diazapan. These meds have reduced the
banding,pins and needle and numbness. At this point I only see my Neuro once a
year (presently Dr. Kerr) and I do this to insure myself that I am on the
cutting edge regarding pain management. I try to live life to its fullest and
have never let my condition define who I am. I expect to get a little better
every day I have left to live...this is my mindset and how I deal with
something so difficult to deal with...let alone try to explain it to someone
who has never encountered anyone with our rare condition.
Rob in New Jersey
From: Jan Hargrove [mailto:jmh1...@sbcglobal.net]
Sent: Wednesday, March 10, 2010 10:51 AM
To: lynne myers; tmic
Subject: Re: [TMIC] Lesions and Myelin Regeneration
I do not agree with the two year statement. My doctor never told me that
I wouldn't get well, nor give me a timeline. The only thing he said would
not return was my temperature control. He was right!! AND, I've had
improvements throughout the 14 years tm's been in my lifeno matter
how small, improvement is improvement and gives hope for more to come!!
My 2¢ janh
From: lynne myers lynnemye...@yahoo.com
To: tmic tmic-list@eskimo.com
Sent: Wed, March 10, 2010 6:26:13 AM
Subject: [TMIC] Lesions and Myelin Regeneration
This is a quote from one of the message forum pages on TM website:
Even though the lesion(s) are gone, there may be underlying nerve damage caused
by the inflammation and the fact that the nerves were unprotected once the
myelin got eaten away. The myelin grows back at 1mm a day, so it takes a
while for the body to repair itself, BUT the nerve can remain damaged.
You will know what damage is left at the 2 yr mark. After this you can still
have some recovery but it is very small and unlikely to be very noticeable.
This information is provided by one of the site administrators who is also a
Registered Nurse.
Re: [TMIC] Lesions and Myelin Regeneration
So Sorry I did mean now not not.
--- On Thu, 3/11/10, Pieter and Heather pieterheat...@shaw.ca wrote:
From: Pieter and Heather pieterheat...@shaw.ca
Subject: Re: [TMIC] Lesions and Myelin Regeneration
To: lynne myers lynnemye...@yahoo.com, tmic tmic-list@eskimo.com
Date: Thursday, March 11, 2010, 4:31 PM
Lynne,
I think you meant to write that Jim Lubin is actually 'NOW' able to move a
finger after being paralyzed for years. Your e-mail says 'not' instead of
'now'. I hate it when that happens and our fingers hit the wrong key. I do it
all the time. However, in this instance it makes such a difference to the
meaning you were getting across about Jim. I think he has had TM for 27 years
now and just last year was able to move his left thumb on command. There is a
video of it too.
Heather in Calgary
- Original Message -
From: lynne myers
To: tmic
Sent: Thursday, March 11, 2010 5:44 AM
Subject: Re: [TMIC] Lesions and Myelin Regeneration
In my original post I did not state that there would be no imporvement after
the two year mark. With TM most of the improvements take place in the first
two years. After that any improvement is slower and less noticable. I would
not want anyone to give up hope. Our TM website founder Jim Lubin is actually
not able to move a finger after being paralized for years.
--- On Wed, 3/10/10, Janice Nichols jan...@centurytel.net wrote:
From: Janice Nichols jan...@centurytel.net
Subject: Re: [TMIC] Lesions and Myelin Regeneration
To: Robert Pall rp...@neillsupply.com, Jan Hargrove
jmh1...@sbcglobal.net, lynne myers lynnemye...@yahoo.com, tmic
tmic-list@eskimo.com
Date: Wednesday, March 10, 2010, 9:33 PM
#yiv2080678091 #yiv467152389 DIV {
MARGIN:0px;}
Wasn't going to chime in any more on this subject, but Rob, you really have
nailed the mindset we all need to have to continue to live our lives and show
improvement. Without it, we are lost to this #!*%# disease!
Janice
From: Robert Pall
Sent: Wednesday, March 10, 2010 10:19 AM
To: Jan Hargrove ; lynne myers ; tmic
Subject: RE: [TMIC] Lesions and Myelin Regeneration
As someone who has had TM for close to 13 years I thought I too would chime
in on the subject. After 12 years I had a new MRI performed which showed the
lesion exactly as it appeared initially (first spotted in my 3rd MRI at the
onset). While the vast majority of my improvement took place in year one I
would agree with Jan that improvement even though small has continued the past
12 years. I walk,drive and exercise more efficiently than I ever could. I have
found it vital to maintain an exercise regimen in order to not let the rest of
my health go downhill. I swim 3-4 times a week, watch my diet (helps my bowel
problems), have Activa every night...it really works!
I beseech all of you to not give up...I no longer am waiting for the cure
that will make me the way I wasI was 50 when TM hit me and I doubt a cure
is in my future. That being said I do take meds,presently the meds I take
for TM include Lyrica,Cymbata and diazapan. These meds have reduced the
banding,pins and needle and numbness. At this point I only see my Neuro once a
year (presently Dr. Kerr) and I do this to insure myself that I am on the
cutting edge regarding pain management. I try to live life to its fullest and
have never let my condition define who I am. I expect to get a little better
every day I have left to live...this is my mindset and how I deal with
something so difficult to deal with...let alone try to explain it to someone
who has never encountered anyone with our rare condition.
Rob in New Jersey
From: Jan Hargrove [mailto:jmh1...@sbcglobal.net]
Sent: Wednesday, March 10, 2010 10:51 AM
To: lynne myers; tmic
Subject: Re: [TMIC] Lesions and Myelin Regeneration
I do not agree with the two year statement. My doctor never told me that
I wouldn't get well, nor give me a timeline. The only thing he said would
not return was my temperature control. He was right!! AND, I've had
improvements throughout the 14 years tm's been in my lifeno matter
how small, improvement is improvement and gives hope for more to come!!
My 2¢ janh
From: lynne myers lynnemye...@yahoo.com
To: tmic tmic-list@eskimo.com
Sent: Wed, March 10, 2010 6:26:13 AM
Subject: [TMIC] Lesions and Myelin Regeneration
This is a quote from one of the message forum pages on TM website:
Even though the lesion(s) are gone, there may be underlying nerve damage caused
by the inflammation and the fact that the nerves were unprotected once the
myelin got eaten away. The myelin grows back at 1mm a day, so it takes a
while for the body to repair itself, BUT the nerve can remain damaged.
You will know what damage is left at the 2 yr mark. After this you can still
have some recovery but it is very small and unlikely to be very noticeable.
This information is provided by one of the site administrators who
Re: [TMIC] To: Barbara in Auburn, CA
Actually what happens is that the inflammation subsides, and the myelin eventually regrows, but the resulting nerve damage remains under the new myelin. Some recovery is possible as the myelin regenerates and covers nerves which are irrated but not damaged hence the two year window that we all hear about for recovery. Once a nerve is damaged it does not regenerate which is the cause of the permanent symptoms. There is alot of information on this topic on the message forums on the TM website if anyone in interested. --- On Tue, 3/9/10, bobby jim elbobber...@earthlink.net wrote: From: bobby jim elbobber...@earthlink.net Subject: Re: [TMIC] To: Barbara in Auburn, CA To: tmic-list@eskimo.com, Barbara Alma balmat...@aol.com Date: Tuesday, March 9, 2010, 9:23 PM As I unnerstand, the inflammation subsides so the lesion seems to heal. What is not replaced is the myelin that covers the damaged nerves, ergo the persistence of symptoms and maladies. BobbyJim in Elvisland From: Barbara Alma To: tmic-l...@eskimo.com Sent: Tuesday, March 09, 2010 15:15 Subject: Fwd: [TMIC] To: Barbara in Auburn, CA Hi Regina, I wish that I had some wisdom to share with you, but I really don't know what happens, unless that in some way, the lesion may just heal. The damage sure remains though, I can attest to that much. Hugs, Barbara A in Auburn CA -Original Message- From: Regina Rummel regina...@sbcglobal.net To: undisclosed recipients: ; Sent: Tue, Mar 9, 2010 8:58 am Subject: [TMIC] To: Barbara in Auburn, CA Hi Barbara, I reread your answer to Randy with interest. You were told you had TM and then that you didn't. But what puzzles me is that your neuros tell you that the lesion isn't there anymore. That must mean that you had it in the first place, doesn't it? Lesions in the spine from my understanding don't disappear, so what happened to it? It's a puzzlement, isn't it? To me anyway. Incidentally, I now use the Bcc line as Bobby Jim advises us to do. Bobby, why is it a good idea? R
[TMIC] Lesions and Myelin Regeneration
This is a quote from one of the message forum pages on TM website: Even though the lesion(s) are gone, there may be underlying nerve damage caused by the inflammation and the fact that the nerves were unprotected once the myelin got eaten away. The myelin grows back at 1mm a day, so it takes a while for the body to repair itself, BUT the nerve can remain damaged. You will know what damage is left at the 2 yr mark. After this you can still have some recovery but it is very small and unlikely to be very noticeable. This information is provided by one of the site administrators who is also a Registered Nurse.
Re: [TMIC] tmic hijacked
I had the same problem a couple of months ago with yahoo. It was right about the time I started using facebook and I was told there were alot of issues with facebook at the time because of someone getting into the system that contains their passwords. I changed my passwords on the email and on facebook and the problems stopped. --- On Tue, 3/2/10, kevin weilacher hwyfli...@yahoo.com wrote: From: kevin weilacher hwyfli...@yahoo.com Subject: Re: [TMIC] tmic hijacked To: Mindy King we4king...@verizon.net, tmic-list@eskimo.com Cc: Mindy King we4king...@verizon.net Date: Tuesday, March 2, 2010, 6:47 PM Just to let everyone know, I've reported the problem to Yahoo Mail Abuse. I just want you to know that I am doing whatever I can to put a stop to it immediately. From: kevin weilacher hwyfli...@yahoo.com To: Mindy King we4king...@verizon.net; tmic-list@eskimo.com Cc: Mindy King we4king...@verizon.net Sent: Tue, March 2, 2010 6:26:12 PM Subject: Re: [TMIC] tmic hijacked I don't know what happened...I use Yahoo internet mail and have all spam filters in place. I also got a bunch of bounced messages... I also use AVG anti virus and it is current and I haven't had any problems lately... I apologize for the inconvenience and I will keep an eye on it. From: Mindy King we4king...@verizon.net To: tmic-list@eskimo.com Cc: Mindy King we4king...@verizon.net Sent: Tue, March 2, 2010 5:29:13 PM Subject: [TMIC] tmic hijacked looks like Kevin Weilacher's email has been hijacked I'm getting spam from his address Mindy the artisan
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] Yooo...hooo....TMIC Members, where are you?
Three types of weather are bad for me. Cold rainy weather is the worst, even the day before the rain starts. Hot humid days are next on my list. Then the cold. So in Michigan that leaves me a couple of months out of the year that aren't any of the above. Heather I agree about the changes in the air pressure because when the weather changes I want to do nothing more than go to bed and not move. Lynne In Arizona where the weather is GREAT! There is none so amazing as God Peggy Wilson In a message dated 2/1/2010 8:06:14 P.M. US Mountain Standard Time, pieterheat...@shaw.ca writes: the weather sure makes a difference with me. Cold even if I'm not out in it makes me stiffen up. Sometimes I think the air pressure also contributes to our misery. Heather in Calgary - Original Message - From: Janice Nichols To: Robert Pall ; kevin weilacher ; Grace M. ; tmic-list@eskimo.com Sent: Monday, February 01, 2010 6:50 PM Subject: Re: [TMIC] Yooo...hoooTMIC Members, where are you? I will let you know this spring what difference there is in my legs. I honestly don't think the weather has much to do with the problem. I will pay more attention to it after reading all of your comments. Janice
Re: [TMIC] Age
I was 42 --- On Fri, 12/11/09, Janice Nichols jan...@centurytel.net wrote: From: Janice Nichols jan...@centurytel.net Subject: [TMIC] Age To: tmic-list@eskimo.com Date: Friday, December 11, 2009, 12:35 AM Hey! I have a request. I was talking to my neuro and he was curious to know the ages that my website friends were when they were hit with TM. Do you all mind sending me that info - even if you only read messages and don't usually respond? I would like to get as many ages to him as possible. I told him you all were a pretty cooperative group! Thanks guys Janice, Missouri
Re: [TMIC] Topamax
Myelin does grow back, its the nerves under the myelin than don't grow back.
Lynne
--- On Mon, 11/16/09, Janice Nichols jan...@centurytel.net wrote:
From: Janice Nichols jan...@centurytel.net
Subject: Re: [TMIC] Topamax
To: tmic-list@eskimo.com, Laurie Zissimos lziss...@aol.com
Date: Monday, November 16, 2009, 11:20 PM
Laurie,
I was told, repeatedly, that myelin did not grow back. Are these the same
doctors that told you you had transverse myelitis?
Janice
From: Laurie Zissimos
Sent: Thursday, November 12, 2009 8:35 PM
To: tmic-list@eskimo.com
Subject: Re: [TMIC] Topamax
Had my annual evaluation with Dr Kerr yesterday after a 2+ hour MRI. The MRI
preliminary report says there is no evidence for abnormal cord signal to
suggest transverse myelitis. I was blown away to learn that the myelin had
all regrown after 4 years. Of course, I still can't walk without a walker
and that is only for ten minutes. Then I revert to the wheel chair. I assume
now all I need if for the nerves to reconnect, lol. I would be happy to
receive comments on this report as I am still baffled about the myelin. I
thought the loss of myelin was the cause of the paralysis.
Dr Kerr also recommended that I start taking Topamax because I complained about
the weight gain associated with the Lyrica. The side effects are kind of
scarey. I wondered who was taking it and what their experience had been.
Looking forward to all responses.
Laurie in Baltimore
-Original Message-
From: Amanda Diskey adis...@yahoo.com
To: tmic-list@eskimo.com
Sent: Thu, Nov 12, 2009 3:14 pm
Subject: [TMIC] Fw: chiropractor
#yiv1412648896 #AOLMsgPart_2_ce3c8c05-a947-4e1a-908b-804695ab417c DIV
{margin:0px;}
- Forwarded Message
From: Amanda Diskey adis...@yahoo.com
To: tmic-list@eskimo.com
Sent: Thu, November 12, 2009 3:14:13 PM
Subject: chiropractor
Does anyone here use a chiropractor or know if it is safe? My shoulders and
neck hurt so bad, and I was wondering if it might help me. the lady i talked
to also does massage which i will definitely do, but i was wondering about the
getting adjusted part. it seems a little scary to me though. any advice or
thoughts?
thanks
amanda
Re: [TMIC] Swine Flu
My physician has told me not to get any vaccines. Because TM is caused by the immune system over reacting there is a chance that any thing that activates your immune system can cause it to over react again. Lynne --- On Sat, 10/31/09, C E snow121...@hotmail.com wrote: From: C E snow121...@hotmail.com Subject: [TMIC] Swine Flu To: tmic-list@eskimo.com Date: Saturday, October 31, 2009, 8:26 AM Did you get the H1N1 vaccine? What kind of comments did your physicians make regarding his recommendation for you to receive it or not receive it? Do you have TM, MS or something else? You may reply to the list or directly to me, whichever you prefer. Carol in Addison, IL Windows 7: I wanted more reliable, now it's more reliable. Wow!
Re: [TMIC] OT In-home assisted living
Our local high school also requires seniors to complete so many hours of community service prior to graduation so that may be another place to check. A few years ago my mom got paid for going in and helping out a friend who was sick. The friend was very low income and the payment came through social services. Lynne --- On Mon, 10/12/09, fr...@franksheldon.com fr...@franksheldon.com wrote: From: fr...@franksheldon.com fr...@franksheldon.com Subject: Re: [TMIC] OT In-home assisted living To: Kevin Wolfthal wolft...@optonline.net, tmic-list@eskimo.com Date: Monday, October 12, 2009, 10:59 AM Wondering if anyone uses help in your own home. Looking for light cooking, laundry and cleaning. How did you find your help? Kevin, In Freeport, ME, there is a community agency that has a list of Volunteers. We have heavy-Duty Volunteers who lift heavy things- these guys are highschool students. We aren't supposed to pay but usually tip them. We have light duty volunteers from time to time. When we need more help it will be there for us. My daughter graduated from a primo School of Science and Math in South Carolina- this was the first of it's king in the US. It was staffed by University of South Carolina professors. One requirement for graduation was 50 hrs of volunteering. Universities look very favorably at students who volunteer. I took this idea and sent it to the lady who runs the Freeport Community Center's volunteering. She loved the idea and called up the superintendent of Schools and they are slowly adding this to the curriculum. So we will have lots of helpers, inside and outside the house. So, try phoning your local town hall and ask around. Often volunteers are kept secret. Few people want to tell everyone that they actually need help. Good Luck F
[TMIC] MICHIGAN TM SUPPORT GROUP MEETING
We will be having a Michigan TM Support Group Meeting on Saturday November 5th at 1pm in Lansing. The exact location of the meeting will be determined my the number of people we have attending. Please feel free to bring a family member or friend with you. It is a great time to share information and meet others who understand what you are going through. If you are planning to attend please contact me and let me know by Halloween. Thank You, Lynne Myers
Re: [TMIC] Looking for TMr's for support groups
Lynne Myers Olivet MI Michigan Support Group Leader
--- On Tue, 9/15/09, L T CHERPESKI cherp...@msn.com wrote:
From: L T CHERPESKI cherp...@msn.com
Subject: Re: [TMIC] Looking for TMr's for support groups
To: 'Butcher, Bernie (SFS)' bernie.butc...@honeywell.com, 'Robert Pall'
rp...@neillsupply.com, 'Janice' jan...@centurytel.net, 'Jill Z'
jillybean60...@yahoo.com, 'Catherine' camoa...@yahoo.com, 'Laura
Beaudin' laura.beau...@gmail.com, Patricia Cooley patticoo...@wi.rr.com
Cc: 'kevin weilacher' hwyfli...@yahoo.com, 'Transverse Mylitis Group'
tmic-list@eskimo.com
Date: Tuesday, September 15, 2009, 9:28 PM
#yiv470963203 v\3a* {
}
#yiv470963203 o\3a* {
}
#yiv470963203 w\3a* {
}
#yiv470963203 .shape {
}
Linda Cherpeski - Eagle, Idaho (Boise area)
- Original Message -
From: Patricia Cooley
To: 'Butcher, Bernie (SFS)' ; 'Robert Pall' ; 'Janice' ; 'Jill Z' ;
'Catherine' ; 'Laura Beaudin'
Cc: 'kevin weilacher' ; 'Transverse Mylitis Group'
Sent: Tuesday, September 15, 2009 8:28 AM
Subject: RE: [TMIC] Looking for TMr's for support groups
Patti - S.E. Wisconsin
From: Butcher, Bernie (SFS) [mailto:bernie.butc...@honeywell.com]
Sent: Tuesday, September 15, 2009 6:48 AM
To: Robert Pall; Janice; Jill Z; Catherine; Laura Beaudin
Cc: kevin weilacher; Transverse Mylitis Group
Subject: RE: [TMIC] Looking for TMr's for support groups
Barney - LI, NY
From: Robert Pall [mailto:rp...@neillsupply.com]
Sent: Tuesday, September 15, 2009 7:44 AM
To: Janice; Jill Z; Catherine; Laura Beaudin
Cc: kevin weilacher; Transverse Mylitis Group
Subject: RE: [TMIC] Looking for TMr's for support groups
Rob-Marlboro New Jersey
From: Janice [mailto:jan...@centurytel.net]
Sent: Monday, September 14, 2009 11:20 PM
To: Jill Z; Catherine; Laura Beaudin
Cc: kevin weilacher; Transverse Mylitis Group
Subject: Re: [TMIC] Looking for TMr's for support groups
Janice - Columbia, Missouri
- Original Message -
From: Jill Z
To: Catherine ; Laura Beaudin
Cc: kevin weilacher ; Transverse Mylitis Group
Sent: Sunday, September 13, 2009 9:54 PM
Subject: Re: [TMIC] Looking for TMr's for support groups
Jill From Chicago
--- On Sun, 9/13/09, Laura Beaudin laura.beau...@gmail.com wrote:
From: Laura Beaudin laura.beau...@gmail.com
Subject: Re: [TMIC] Looking for TMr's for support groups
To: Catherine camoa...@yahoo.com
Cc: kevin weilacher hwyfli...@yahoo.com, Transverse Mylitis Group
tmic-list@eskimo.com
Date: Sunday, September 13, 2009, 8:29 PM
...and I'm Laura from Edmonton, Alberta. :)
On Sun, Sep 13, 2009 at 7:25 PM, Catherine camoa...@yahoo.com wrote:
Kevin,
That is a wonderful idea. Why don't we all just say where we are from .. as
I have seen here. Several support groups may start. Thank you for a great
idea
So I will start...
Catherine, caretaker Central Mass.
Re: [TMIC] Arthritis
It is a cream. I have used this for about 4 years and it helps quite a bit. I use it mainly on my right hip and hands. Lynne --- On Mon, 8/24/09, Janice jan...@centurytel.net wrote: From: Janice jan...@centurytel.net Subject: [TMIC] Arthritis To: tmic-l...@eskimo.net Date: Monday, August 24, 2009, 3:54 PM Has anyone tried the Australian Dream the has emu oil in it? I don't know if it is a cream or pill - I think cream. One of our pharmacies carries it, but don't want to put the money, $30.00, in it if it is just a pipe dream. Have tried several arthritis creams and not satisfied yet. Thanks, Janice
Re: [TMIC] Linda Needs Some Help
I get mine at our local drug store, but they also have a website.
www.australiandream.com/
--- On Tue, 8/18/09, L T CHERPESKI cherp...@msn.com wrote:
From: L T CHERPESKI cherp...@msn.com
Subject: Re: [TMIC] Linda Needs Some Help
To: tmic tmic-list@eskimo.com, lynne myers lynnemye...@yahoo.com
Date: Tuesday, August 18, 2009, 12:06 AM
Lynne, is this something we could find at a local drug store, or did you have
to special order it? I'm really glad to hear you've found something that works.
Linda
- Original Message -
From: lynne myers
To: tmic
Sent: Sunday, August 16, 2009 7:17 AM
Subject: Re: [TMIC] Linda Needs Some Help
The glucosamine never did much for me either, but my husband swears by it. A
few years ago I found a cream called Australian Dream. Its made out of emu oil
and it really helps with the arthritis in my hands. I use it a couple of times
a day.
Lynne
--- On Sun, 8/16/09, L T CHERPESKI cherp...@msn.com wrote:
From: L T CHERPESKI cherp...@msn.com
Subject: Re: [TMIC] Linda Needs Some Help
To: 'Deborah Nord Capen' dca...@earthlink.net, tmic-list@eskimo.com,
Patricia Cooley patticoo...@wi.rr.com
Date: Sunday, August 16, 2009, 12:08 AM
#yiv625831032 UNKNOWN {
FONT-FAMILY:Cambria Math;}
#yiv625831032 UNKNOWN {
FONT-FAMILY:Calibri;}
#yiv625831032 UNKNOWN {
FONT-FAMILY:Tahoma;}
#yiv625831032 UNKNOWN {
FONT-FAMILY:Consolas;}
#yiv625831032 UNKNOWN {
MARGIN:1in;}
#yiv625831032 #yiv436877522 P.MsoNormal {
MARGIN:0in 0in 0pt;FONT-FAMILY:Times New Roman, serif;FONT-SIZE:12pt;}
#yiv625831032 #yiv436877522 LI.MsoNormal {
MARGIN:0in 0in 0pt;FONT-FAMILY:Times New Roman, serif;FONT-SIZE:12pt;}
#yiv625831032 #yiv436877522 DIV.MsoNormal {
MARGIN:0in 0in 0pt;FONT-FAMILY:Times New Roman, serif;FONT-SIZE:12pt;}
#yiv625831032 #yiv436877522 A:link {
COLOR:blue;TEXT-DECORATION:underline;}
#yiv625831032 #yiv436877522 SPAN.MsoHyperlink {
COLOR:blue;TEXT-DECORATION:underline;}
#yiv625831032 #yiv436877522 A:visited {
COLOR:purple;TEXT-DECORATION:underline;}
#yiv625831032 #yiv436877522 SPAN.MsoHyperlinkFollowed {
COLOR:purple;TEXT-DECORATION:underline;}
#yiv625831032 #yiv436877522 P {
MARGIN:0in 0in 0pt;FONT-FAMILY:Times New Roman, serif;FONT-SIZE:12pt;}
#yiv625831032 #yiv436877522 PRE {
MARGIN:0in 0in 0pt;FONT-FAMILY:Courier New;FONT-SIZE:10pt;}
#yiv625831032 #yiv436877522 SPAN.HTMLPreformattedChar {
FONT-FAMILY:Consolas;}
#yiv625831032 #yiv436877522 SPAN.EmailStyle20 {
FONT-FAMILY:Calibri, sans-serif;COLOR:#1f497d;}
#yiv625831032 #yiv436877522 .MsoChpDefault {
FONT-SIZE:10pt;}
#yiv625831032 #yiv436877522 DIV.Section1 {
}
Deborah, I didn't know this came in a gel either. I could sure use some of
that on my hands and other achy areas too. Do you just buy it at the drug
store? A few months ago I bought a tube of some kind of cream for arthritis
and it really does nothing. I don't even want to think about how much money
I've spent over the years on products that claim to help with joint pain. It
would really be nice to find something that gives some relief.
Linda
Re: [TMIC] Linda Needs Some Help
The glucosamine never did much for me either, but my husband swears by it. A
few years ago I found a cream called Australian Dream. Its made out of emu oil
and it really helps with the arthritis in my hands. I use it a couple of times
a day.
Lynne
--- On Sun, 8/16/09, L T CHERPESKI cherp...@msn.com wrote:
From: L T CHERPESKI cherp...@msn.com
Subject: Re: [TMIC] Linda Needs Some Help
To: 'Deborah Nord Capen' dca...@earthlink.net, tmic-list@eskimo.com,
Patricia Cooley patticoo...@wi.rr.com
Date: Sunday, August 16, 2009, 12:08 AM
_filtered #yiv436877522 {
font-family:Cambria Math;}
_filtered #yiv436877522 {
font-family:Calibri;}
_filtered #yiv436877522 {
font-family:Tahoma;}
_filtered #yiv436877522 {
font-family:Consolas;}
_filtered #yiv436877522 {margin:1.0in 1.0in 1.0in 1.0in;}
#yiv436877522 P.MsoNormal {
MARGIN:0in 0in 0pt;FONT-FAMILY:Times New Roman, serif;FONT-SIZE:12pt;}
#yiv436877522 LI.MsoNormal {
MARGIN:0in 0in 0pt;FONT-FAMILY:Times New Roman, serif;FONT-SIZE:12pt;}
#yiv436877522 DIV.MsoNormal {
MARGIN:0in 0in 0pt;FONT-FAMILY:Times New Roman, serif;FONT-SIZE:12pt;}
#yiv436877522 A:link {
COLOR:blue;TEXT-DECORATION:underline;}
#yiv436877522 SPAN.MsoHyperlink {
COLOR:blue;TEXT-DECORATION:underline;}
#yiv436877522 A:visited {
COLOR:purple;TEXT-DECORATION:underline;}
#yiv436877522 SPAN.MsoHyperlinkFollowed {
COLOR:purple;TEXT-DECORATION:underline;}
#yiv436877522 P {
MARGIN:0in 0in 0pt;FONT-FAMILY:Times New Roman, serif;FONT-SIZE:12pt;}
#yiv436877522 PRE {
MARGIN:0in 0in 0pt;FONT-FAMILY:Courier New;FONT-SIZE:10pt;}
#yiv436877522 SPAN.HTMLPreformattedChar {
FONT-FAMILY:Consolas;}
#yiv436877522 SPAN.EmailStyle20 {
FONT-FAMILY:Calibri, sans-serif;COLOR:#1f497d;}
#yiv436877522 .MsoChpDefault {
FONT-SIZE:10pt;}
#yiv436877522 DIV.Section1 {
}
Deborah, I didn't know this came in a gel either. I could sure use some of
that on my hands and other achy areas too. Do you just buy it at the drug
store? A few months ago I bought a tube of some kind of cream for arthritis
and it really does nothing. I don't even want to think about how much money
I've spent over the years on products that claim to help with joint pain. It
would really be nice to find something that gives some relief.
Linda
Re: [TMIC] Wheelchair questions
Have you looked on ebay for chairs. I got my mom a nice one on there for about $300 about a year ago. --- On Thu, 8/13/09, Kevin Wolfthal wolft...@optonline.net wrote: From: Kevin Wolfthal wolft...@optonline.net Subject: Re: [TMIC] Wheelchair questions To: tmic-list@eskimo.com Date: Thursday, August 13, 2009, 9:53 PM Thanks to everyone who replied regarding my wheelchair quesrions! I wish I could get a scooter for cost and portability, but I really need a small mid-wheel drive chair to get around the tight spaces of my condo. Unfortunately I will have to pay for this chair out of pocket because I got a larger chair through insurance a few years ago and they won't cover another one so soon. The Pride Go-Chair looks like it will be the best one for my needs. I am having trouble with Maxim Mobility not returning my calls..the providers around here are not so great in my experience. Thanks again, Kevin Patricia Cooley wrote: KEVIN I PURCHASED A PRIDE GO GO ELITE SCOOTER IN APRIL. I LOVE IT. I HAVE USED IT FOR SHOPPING, AND ATTENDING OUTSIDE FUNCTIONS LIKE OUR STATE FAIR. IT IS EASILY DISASSEMBLED AND WOULD FIT IN THE TRUNK OF ANY CAR. THE HEAVIEST ITEM IS THE BATTERY WHICH IS 28 LBS. MY DAUGHTER CAN TAKE IT APART IN ABOUT A MINUTE. I BOUGHT MINE NEW FOR $1300.00, BUT YOU CAN ALSO GET THEM USED. A GOOD FRIEND OF MINE BOUGHT A USED ONE SEVERAL MONTHS AGO. I DID NOT WANT A POWER WHEELCHAIR BECAUSE THEY ARE TOO HEAVY AND I ONLY USE MY SCOOTER WHEN I AM OUT NOT IN THE HOUSE. IF YOU GOOGLE POWER SCOOTERS, YOU WILL HAVE MANY LISTED. PATTI - WISCONSIN -Original Message- From: Kevin Wolfthal [mailto:wolft...@optonline.net] Sent: Tuesday, August 11, 2009 8:55 PM To: tmic-list@eskimo.com Subject: [TMIC] Wheelchair questions I am wondering who uses Power Wheelchairs on the TMIC? I cannot use a manual wheelchair because my hands are bad. Would you mind posting which chair you use, what you like or don't like about it, is it good for indoor or outdoor use or both? I am considering a Pride Go-Chair mainly because it is small and comes apart for travel. (note: this is not the same as a Go-Go Scooter) Also, is anyone familiar with the wheelchair provider Maxim Mobility in New Haven, CT? Good or bad? Thanks! Kevin
Re: [TMIC] That banding feeling
I take tegretol 200 mg. twice a day and it helps with the banding. Only have it occasionally now and thats only if I have really over done it. Lynne --- On Wed, 8/12/09, rn11...@yahoo.com rn11...@yahoo.com wrote: From: rn11...@yahoo.com rn11...@yahoo.com Subject: Re: [TMIC] That banding feeling To: Janice jan...@centurytel.net Cc: tmic-list@eskimo.com Date: Wednesday, August 12, 2009, 7:52 AM Hi Janice, I have the banding;it's a severe tightness around my trunk from T4 to just below my waist. It has been constant since 8/13/95 when tm hit me. It gets tighter and more uncomfortable if I do anything more than my usual routine. At times it is so tight I can't take in a deep breath.It is not painful. I take baclofen 30 mgm twice a day;have been on that amount since onset of tm.I tried to cut down the baclofen,but then the tightness becomes unbearable.
Re: [TMIC] Medications
My spasms are worse the lower in my body you go. Lower part of legs give me the most problems. They used to be so bad my husband would tell me it looked like I was trying to ride a bicycle. A couple of times when I was laying on the sofa they actually flipped me off onto the floor. Muscles in legs use to always be reall tight all the time too, so much so that when they would try to test my reflexes nothing moved. Now things have gotten much better, I still have spasms off and on all day (worse when I have been overdoing it) but not nearly as severe when they occur. Yes they have always been worse at night or when I try to lay down to relax. Lynne --- On Sun, 7/19/09, Janice jan...@centurytel.net wrote: From: Janice jan...@centurytel.net Subject: Re: [TMIC] Medications To: lynne myers lynnemye...@yahoo.com, tmic tmic-list@eskimo.com Date: Sunday, July 19, 2009, 11:31 PM What are your spasms like? Are they mostly at nite? Also, is it located from bottom of feet to hip? Janice - Original Message - From: lynne myers To: Janice ; tmic Sent: Friday, July 17, 2009 6:51 AM Subject: Re: [TMIC] Medications The pump is for the spasms. It works the same as oral Baclofen but uses much less medication to get the same results. The actual pump is inserted just above and to the left side of my belly button. Then the tubing runs from there around my left side and into the lower part of my spinal column. The pump is about 4 across and sticks out about an inch and a half. Its not really noticable under looser fitting tops, but real noticable in the summer, especially in my bathing suit. No more clingy fabrics for me lol. Lynne --- On Thu, 7/16/09, Janice jan...@centurytel.net wrote: From: Janice jan...@centurytel.net Subject: Re: [TMIC] Medications To: lynne myers lynnemye...@yahoo.com, Bernie (SFS)Butcher bernie.butc...@honeywell.com, tmic tmic-list@eskimo.com Date: Thursday, July 16, 2009, 11:45 PM Is the Baclofen pump you are using for pain or spasms, etc.? Also, where is it inserted? Janice
RE: [TMIC] Medications
Rob,
I have been taking Tegretol for a couple of years now for the banding and it is
working great. I still have some banding there but not nearlly as bad as it
used to be. It doesnt take my breath away when it happens and I can continue
to function thur episodes now.
I tried the Lamictal, but developed a rash so had to stop taking it before I
ever found out if it would work.
Lynne
--- On Fri, 7/17/09, Robert Pall rp...@neillsupply.com wrote:
From: Robert Pall rp...@neillsupply.com
Subject: RE: [TMIC] Medications
To: Janice jan...@centurytel.net, Tmic-list@eskimo.com
Date: Friday, July 17, 2009, 7:38 AM
#yiv1258366108 DIV {
MARGIN:0px;}
Janice...I believe my body has gotten so used to these meds..that Dr. Kerr felt
it would be good to try a change.The new drugs he may try after I have weaned
myself off the Lyrica are Lamictal or Tegretol (for the banding) and Provigil
(for fatigue)I would love to hear from other members who currently take
these drugs as to how beneficial they are. As far as the meds I am weaning off
I really had no bad reactions...it just feels like they are no longer helping.
All the best!
Rob in New Jersey
Re: [TMIC] Medications
The pump is for the spasms. It works the same as oral Baclofen but uses much less medication to get the same results. The actual pump is inserted just above and to the left side of my belly button. Then the tubing runs from there around my left side and into the lower part of my spinal column. The pump is about 4 across and sticks out about an inch and a half. Its not really noticable under looser fitting tops, but real noticable in the summer, especially in my bathing suit. No more clingy fabrics for me lol. Lynne --- On Thu, 7/16/09, Janice jan...@centurytel.net wrote: From: Janice jan...@centurytel.net Subject: Re: [TMIC] Medications To: lynne myers lynnemye...@yahoo.com, Bernie (SFS)Butcher bernie.butc...@honeywell.com, tmic tmic-list@eskimo.com Date: Thursday, July 16, 2009, 11:45 PM Is the Baclofen pump you are using for pain or spasms, etc.? Also, where is it inserted? Janice
Re: [TMIC] Medications
Naomi, If you have a choice of neurosurgeons at U of M I highly recommend Dr. Sager. He did my pump surgery. Lynne --- On Fri, 7/17/09, ladyno...@aol.com ladyno...@aol.com wrote: From: ladyno...@aol.com ladyno...@aol.com Subject: Re: [TMIC] Medications To: fr...@franksheldon.com, tmic-list@eskimo.com Date: Friday, July 17, 2009, 4:54 PM Everyone I tell about them not being able to get an IV in, just cannot believe it. My sister, who is a nurse, said I need to go to a different hospital. I am in the process of having my primary care physician set me up with a neurosurgeon at University of Michigan Hospital. I sure hope so, because I am actually afraid to go back there. It t00k three nurses and an anesthesiologists, using ultrasound, and poking me all over, to tell me that they could not get the IV in. Naomi C-4 Quadriplegic, since July 2, 2005 Due to Transverse Myelitis Can love help you live longer? Find out now.
RE: [TMIC] Medications
I am also considering having my pump removed but not because I am having any problems with it, just because of the cost of maintaining and getting it filled. Even with health insurance my co-pays and my 20% end up costing me well over $400 every three months when I get it filled. That and having to drive a couple hundred miles to get it done. Lynne --- On Fri, 7/17/09, Butcher, Bernie (SFS) bernie.butc...@honeywell.com wrote: From: Butcher, Bernie (SFS) bernie.butc...@honeywell.com Subject: RE: [TMIC] Medications To: ladyno...@aol.com, tmic-list@eskimo.com Date: Friday, July 17, 2009, 1:30 PM Hi Naomi - please keep me informed, they want to put one in me if trial works BERNARD BUTCHER From: ladyno...@aol.com [mailto:ladyno...@aol.com] Sent: Friday, July 17, 2009 12:49 PM To: Butcher, Bernie (SFS); tmic-list@eskimo.com Subject: Re: [TMIC] Medications As you all are contemplating your Baclofen doses or trial, I am waiting for the neurosurgeon to remove my Baclofen pump. I had my pump put in July 2006. Initially the pump worked well for preventing spasms, but I did not know that it would prevent me from standing or walking, because I wasn't getting any physical therapy for a very long time. Once I got the chance to get physical therapy, I wasn't able to stand at all. I was like a limp noodle. No matter how hard they tried, I wasn't able to stand, not in the standing frame nor with a walker. I had the doctor reduce the Baclofen dose in my pump, in small increments. No matter how much he reduced, there was still no change. About six months ago, my pump began to give me problems such as swelling and tenderness to the touch. I spent two visits in the hospital within three months, for the same problem. I was told they couldn't find anything wrong with the pump, but each time they put me on intravenous antibiotics and the swelling went down and tenderness diminished. This led me to believe that there was an infection somewhere. After my pump kept swelling and the neurosurgeon's nurse told me that the pump is a foreign object in your body, and the body is constantly trying to reject it, and some patients pumps were rejected totally outside of the body, I decided to have my pump removed. My oral Baclofen was started up again, and I was weaned off the pump. I then began to have more tone, and am able to stand better. I'm not able to walk yet, but I have some inpatient physical therapy coming up once I get this pump removed. I tried once to have the pump removed but was unsuccessful. They could not get an IV in. They tried from my feet to my exterior Jugular. Once I get over this bladder infection, they will try again. Wish me luck. Naomi C-4 Quadriplegic, since July 2, 2005 Due to Transverse Myelitis Can love help you live longer? Find out now.
RE: [TMIC] Medications
Barney, I have had a baclofen pump in for a couple of years now. Just wish the results I was getting now were half as good as what I got from the trial. But when my dosage is adjusted high enough to get those results I have increased bladder issues and weakness. Hoping things work out better for you. Lynne --- On Thu, 7/16/09, Butcher, Bernie (SFS) bernie.butc...@honeywell.com wrote: From: Butcher, Bernie (SFS) bernie.butc...@honeywell.com Subject: RE: [TMIC] Medications To: Robert Pall rp...@neillsupply.com, Tmic-list@eskimo.com Date: Thursday, July 16, 2009, 3:15 PM Medications Hi Rob – do you take Baclofen? Next week I am going in the hospital for a spinal tap trial before I get a Baclofen pump installed. I am wary about the whole thing Barney
Re: [TMIC] Class Reunions
Janice, I got TM shortly before my 25 year class reunion and did not attend that one. Not so much out of vanity but because at the time I didnt think I would be able to handle being out and about for that length of time. My 30 year is coming up the end of this month. I wont be able to attend the main reunion on saturday because of a conflict of dates with another event, but am planning on attending a smaller dinner on friday so atleast I will get to see some of the people. I am thinking that for the short time I am at the dinner I may be able to get away with no one knowing anything is wrong with me, so shouldnt have to answer any questions. Just hoping for a good day and good weather so I wont have to use my cane. Lynne --- On Wed, 7/1/09, Janice jan...@centurytel.net wrote: From: Janice jan...@centurytel.net Subject: [TMIC] Class Reunions To: transverse myelitis tmic-list@eskimo.com Date: Wednesday, July 1, 2009, 11:47 PM I have another question for you all that want to answer: I will be having another class reunion shortly and graduating from the hometown high school, I was usually one of about 15 that helped to plan it. We had around 500 in our graduating class. Anyway, I am debating whether or not to be a part of the planning or even attending the reunion. This is the first reunion since I got clobbered with TM. I still have to use a cane and would maybe need my wheelchair.I was fairly well known and I am afraid I would be answering questions all nite about TM. My question is: Would you let TM keep you from attending a reunion?Be honest. If you were faced with this decision this weekend, what would you do? Janice
[TMIC] PBS Documentary Cody
For those of you who dont get Readers Digest there is a short article in there about Cody Unser, a 22 year old who was 12 when she got TM. The article is titled Best Plunge and is on page 81 of Julys Readers Digest. PBS is going to be airing a documentary about her in July. Documentary is called Cody. She is the daughter of race car driver Al Unser Jr. Should be interesting to watch. I havent been able to find dates of airing yet, but if anyone does please post and let me know. I know they will be different for different time zones. Lynne
Re: [TMIC] AntiDepressant
Debi,
Antidepressants like elevil, cymbalta, desyrel and others are often prescribed
for pain relieving properties so they were not lying to you when they gave it
to you. These often have great results.
Lynne
--- On Fri, 6/19/09, bradebi brad...@gmail.com wrote:
From: bradebi brad...@gmail.com
Subject: Re: [TMIC] AntiDepressant
To: tmic-list@eskimo.com, Akua a...@artfarm.com
Date: Friday, June 19, 2009, 5:51 PM
#yiv1347754280 v\:* {
}
#yiv1347754280 v\:* {
}
Way to go Akua !...when I got my DX of TM..I was put on elavil every night
before bed. I was told it was for the chronic pain... But I came to find out it
is a antidepressant. And that was it...I didn't get PT at that time because my
disability was un-diagnosed for several years...my spastic paraplegia was
treated with neurontin..and I had a sleep study because of spasms in the
night..and the results came back with I twitch kick and spasm every 20
seconds..and I have a very low breathing and have to have oxygen at
night.but because I have TM the Doctor said he couldn't tell if I had sleep
apnea or it is the TM causing it.
I too have to dress like a dork and I like the fact of being in the chair I can
hide if I am wet.
When I moved up here..I discovered there isn't many places that are handicap
accessible (up in the high Sierras!!)..so I have had to fight to get
everything!..and I am fixin to join or help people here that are disabled..and
are house bound...So I agree Akua someone needs to teach me how to live like a
paraplegic.
Debi
--
Re: [TMIC]
I got mine on e-bay. There are usually alot of them listed there with buy it
now prices.
--- On Wed, 6/17/09, bradebi brad...@gmail.com wrote:
From: bradebi brad...@gmail.com
Subject: Re: [TMIC]
To: kimr1...@bellsouth.net, tmic-list tmic-list@eskimo.com, lynne myers
lynnemye...@yahoo.com
Date: Wednesday, June 17, 2009, 8:44 PM
#yiv712684083 v\:* {
}
#yiv712684083 v\:* {
}
Lynne were do you find a chillow?
Debi
---Original Message---
From: lynne myers
Date: 06/17/09 06:33:50
To: kimr1...@bellsouth.net; tmic
Subject: Re: [TMIC]
I sleep with a Chillow at night and it helps a great deal. It is a gel filled
pad for your pillow and now I dont have to keep changing pillows all night to
find a cooler feeling one.
Lynne
--- On Tue, 6/16/09, kimr1...@bellsouth.net kimr1...@bellsouth.net wrote:
From: kimr1...@bellsouth.net kimr1...@bellsouth.net
Subject: Re: [TMIC]
To: Janice jan...@centurytel.net, bradebi brad...@gmail.com,
transverse myelitis tmic-list@eskimo.com
Date: Tuesday, June 16, 2009, 11:45 PM
no but will give it a try
-- Original message from Janice jan...@centurytel.net:
--
Have you tried sleeping with cold packs under your neck? Might
help Janice
Re: [TMIC]
I sleep with a Chillow at night and it helps a great deal. It is a gel filled pad for your pillow and now I dont have to keep changing pillows all night to find a cooler feeling one. Lynne --- On Tue, 6/16/09, kimr1...@bellsouth.net kimr1...@bellsouth.net wrote: From: kimr1...@bellsouth.net kimr1...@bellsouth.net Subject: Re: [TMIC] To: Janice jan...@centurytel.net, bradebi brad...@gmail.com, transverse myelitis tmic-list@eskimo.com Date: Tuesday, June 16, 2009, 11:45 PM no but will give it a try -- Original message from Janice jan...@centurytel.net: -- Have you tried sleeping with cold packs under your neck? Might help Janice
Re: [TMIC] Managing in winter
For me the only issues I have with winter is an increase in pain, the heat makes my spasms much worse than cold. I have never lived any where other than snowy Michigan so I think coping with the ice and snow have just become normal. I just wear rubber soled tennis shoes and keep going. As long as there is atleast a thin layer of snow over any ice that may be there walking is not that hard. The only problems happen when places try to remove all the snow from parking lots, side walks etc and then it freezes. I use my cane in winter but that is just for my comfort, dont think it would actually help if I was going to fall. --- On Sun, 6/14/09, jharpe...@aol.com jharpe...@aol.com wrote: From: jharpe...@aol.com jharpe...@aol.com Subject: [TMIC] Managing in winter To: tmic-list@eskimo.com Date: Sunday, June 14, 2009, 11:40 PM This may seem like an odd question here at the beginning of the summer, but my husband and I were talking about job situations and long-term possibilities and the like, and he made the comment that he never considered moving up North where there was a lot of snow because of my situation. It's true that when we do have snow and ice, which isn't too often here in SC, I pretty much am confined inside. I walk without a cane or walker, but my balance and footing aren't sure enough that I could walk where it is slippery. Though I love him for taking that into account, I hate that he is limited in that way. How DO some of you manage in wintry weather? Does just sprinkling rock salt on your driveway or front step help, or are there other things you do to cope, or do you just stay inside when it's slippery out? Barbara H. http://barbarah.wordpress.com/ Download the AOL Classifieds Toolbar for local deals at your fingertips.
Re: [TMIC] Occupations
Before TM I was working as the Assistant Director of Nursing in a nursing home. I loved my job and the people I worked with. It took me years to get to the position I wanted and was only able to actually do the job for about 7 months before TM struck in June of 2003. I have not worked since that time. Although I am able to walk independently now I still have occasional falls that happen out of the blue. Between that, the extreme fatigue and the decreased abiltiy to concentrate that I have its just not safe for me to return to nursing. At first my long term disability company kept saying there was no reason I couldn't return to my job because it was an administrative job so it was sedentary. I asked them if any of them had ever worked in a nursing home and if so if they had ever seen anyone who works in ons sitting at a desk all day. I sent them a copy of my job description that included every thing from routine paper work to covering staffing shortages. After that they never questioned my ability to work again. Even after six years I continue to hope that some day things will change and I will be able to return to work. Lynne --- On Fri, 6/5/09, Janice jan...@centurytel.net wrote: From: Janice jan...@centurytel.net Subject: [TMIC] Occupations To: transverse myelitis tmic-list@eskimo.com Date: Friday, June 5, 2009, 12:22 PM Hi Guys! I have been curious about something for a while and since things have kind of slowed down, want to ask you all what you did before TM hit and if you were able to go back to it or if you are doing something new. I am including even those who just read these emails and don't usually respond. I would like to hear from everybody and would think all of us would be interested. I will start: I was a school nurse's secretary/assistant in a large high school for 19 years. I absolutely loved it - everyday was different, as you can imagine working with high schoolers! Our school nurse was gone a lot to other schools we were responsible for, so I was left alone quite a bit and handled many different situations. I was well trained for this and it was great. Janice
[TMIC] June Birthdays
You can add me to the June list on the 24th. Lynne
Re: [TMIC] Steroids and Osteoporosis
There is another option you may want to check into, I know there is a company
out there that does vitamin D in a liquid form that you rub on your chest
every day.
--- On Thu, 5/28/09, CANDIS KALLEY cakal...@embarqmail.com wrote:
From: CANDIS KALLEY cakal...@embarqmail.com
Subject: Re: [TMIC] Steroids and Osteoporosis
To: tmic-list tmic-list@eskimo.com
Date: Thursday, May 28, 2009, 10:58 AM
#yiv618796850 p {margin:0;}
I have been taking Boniva for over 7 years. I tried the daily and weekly
supplements but that caused constant diarrhea
Part of my problems is that 33 years ago, I had to have my colon removed
(ileostomy) and a foot of my small intestine along with the rectum (I was given
a 90% of cancer but beat that). Therefore, my body does not absorb alot of the
nutrients that I need. I am on 50,000 units of Vit. D 1X weekly plus I take
additional supplements of Vit. D, 2,000 IU and calcium with magnesium 2X
daily. Plus I eat yogart, eat cheese, and have milk daily. The milk does
cause diarrhea but I LOVE milk and try to have it in the afternoon.
The good thing about the ileostomy is that I don't have the problems of
constipation that alot of us TM'ers have because I wear an appliance to catch
the waste and have to empty it atleast 5X aday.
I also have the problem that even with the Vit. D supplements, my system only
shows 1/4 of the required Vit. D.
I did some research and yes I thought about the IV but the cost is about $1800
which is alot but if you are paying approx. $100 per month for Boniva is not
too much different. I also found where you can have a daily injection of
teriparatide (forteo) but haven't found any $ amount.
My biggest problem is that I was born into the wrong body or with this body the
wrong family I could almost be a bionic woman with the $ amount I have had to
spend just to keep living!
Prayers and thoughts for you and yours,Candy K.
- Original Message -
From: montzma...@aol.com
To: cakal...@embarqmail.com
Sent: Thursday, May 28, 2009 10:07:08 AM GMT -05:00 US/Canada Eastern
Subject: Re: [TMIC] Steroids and Osteoporosis
I HAVE HAD OSTEOPOROSIS FOR YEARS NOW. I HAVE HAD TM FOR ALMOST 18 YEARS. I
HAVE BEEN ON AND OFF OF THEM FOR THE LAST 17 AND 8 MONTHS OF LIFE WITH TM.
I GET A BONE DENSITY TEST EVERY YEAR. I TAKE 50,000 UNITS OF VITAMIN D ONCE A
MONTH.
I ALSO TAKE BONIVA ONCE A MONTH. MINE IS IN MY HIPS. BUT I HAVE GREATLY
IMPROVED. SO
MY ENDOCRONOLOGIST HOPES I CAN STOP THE BONIVA IN A YEAR.
THEY NOW HAVE A SHOT YOU TAKE CALLED RESTASIS ONCE A YEAR, ITS REALLY A FIFTEEN
MINUTE IV SORRY ABOUT THAT. MY DOCTOR WANTED ME TO DO THAT BUT ITS VERY
EXPENSIVE LIKE 1800 SO MY INSURANCE COMPANY WOULD NOT COVER IT.SO I WILL STAY
ON THE BONIVA FOR ANOTHER YEAR IT WORKS AND IS ALOT CHEAPER, I PAY 150.00 FOR 3
PILLS.
EVERYONE ON STEROIDS ARE WHO HAVE BEEN ON THEM NEED A BONE DENSITY TEST.
TIAD PAM!
Cooking Dinner For Two? Sign Up Get Immediate Member-Only Savings.
Re: [TMIC] Re: over heating
Most of the strength returned in my legs. I just have some residual weakness on my right side. I walk around the house and the yard fine without any assistive devices, only use cane when I go out because I do fall frequently, and use electric carts in stores when I will be shopping for more than a few items because of fatigue. We have steps going into the pool with handrails so I don't have any problems getting in and out of the water. I don't do alot of actual swimming anymore because it hurts my legs, just float or walk around, I will be 47 in a couple of months. --- On Thu, 4/9/09, Janice jan...@centurytel.net wrote: From: Janice jan...@centurytel.net Subject: Re: [TMIC] Re: over heating To: lynnemye...@yahoo.com Date: Thursday, April 9, 2009, 9:32 PM How strong are your legs that you can get into a pool? How does it feel? Is it easier to move around in water? I used to do water aerobics, in fact, that was when I first noticed something strange with my legs. All of a sudden one week I would come home from aerobics and my legs would feel really tired. I just thought that I was working harder in the water. Wrong. By the end of the week my legs gave out and that was that! I really miss walking in the water. How old are you? Janice
[TMIC] Re: over heating
I don't know about anyone else but I have had problems with over heating since TM hit. Seems like I am constantly putting on and taking off clothes. Don't remember the last time I was able to crawl into bed and snuggle down under the covers without having to throw them off a couple of minutes later. Also have a problem with feeling like the top two thirds of my back are on fire. Lynne
RE: [TMIC] Implantable pumps
I have had my baclofen pump for about a year and a half now. I dont think it works any better at controling the spasms than the oral baclofen does, but I dont have the brain fog as bad as I did when taking the pills. The main problem I have with the pump is the cost. My insurance covers 80% of cost so every time I have to go in for a refill (every three months) it costs me about $350. Plus I have to drive about 150 miles round trip to have it filled and / or adjusted. The level I am at right now is not as effective as I would like, but when we tried turning it up I was unable to empty out my bladder so had to go back down. As far as infections have had no problems there. But the surgery itself was miserable. Between the almost 6 incision in the front where the actual pump is and the 3 incision on back where the catheter was inserted into spine I was in alot of pain for the first week. It is also very difficult to find cloths that dont cling to the pump and make it stand out like a sore thumb. The pump has to be replaced every 5 years, and when that time comes I don't think I will have another one put in, will just have them take this one out. Lynne From: gor...@earthlink.net [mailto:gor...@earthlink.net] Sent: Thursday, March 12, 2009 12:49 PM To: tmic-list@eskimo.com Subject: [TMIC] Implantable pumps I want to get some feedback on the implantable pump (intrathecal) that provides meds directly into the spine. Any problems with infection? Cost on Medicare - 80/20 or 100% ? Convenient to have, or a pain with upkeep, maintenance, whatever problems you may have had? Did it work (regardless of the med, but it would be nice to know)? I am looking at pain relief, and probably anti-spasmodic being delivered via this device. Thanks for your input. mt
[TMIC] Hey all
Just wondering if anyone knows why the like to respond to postings no longer shows up on emails? It sure made it alot easier for me to reply than having to log on to site to do it. One of the recent postings really hit home with me. It mentioned being labled a hypocondriac. I spent over a year trying to find out what was wrong with me when I first got TM and I think that label was alot of the problem. The primary care doctor I was seeing at the time decided it was all in my head and I am pretty sure he passed that information on to all of the other doctors I demanded he send me to. Lynne
[TMIC] Unidentified subject!
Thanks to all of you who replied to me. Sorry I didnt type more information in introduction, was a long weekend for me and need a few days to recover. I live in Southern Michigan. Lynne
[TMIC] Unidentified subject!
At Patti's suggestion at yesterdays support group meeting I decided to join tmic. My name is Lynne and I have had TM for 4 years now. I am able to walk with a cane now, after spending almost a year in a wheel chair. Prior to TM i worked as a registered nurse. I am married and have two sons ages 22 and 25. Along with TM we are dealing with helping care for father in law who has alzheimers. Lynne
