Re: [TMIC] T.e.n.s. Unit
I do want to tell you all about the TENS pads and my experience. I am highly allergic to many things especially glue - I need to use paper tape for example. The pads provided with any TENS units caused me to have a rash and hives - VERY uncomfortable. I tried several types of pads - even the hypo-allergic - all with the same result. I think it's the gel used on the pads. SO, I soak the pads in water for 24 and the gel falls off. I then wash the pads several times and dry them. I then use paper tape to re-inforce the stem area around where the connector comes out of the pad otherwise the stem falls out in a couple of days. When I use the pads, I use an aloe gel on the pad - result no more alleric reaction. You can get the aloe gel at any drugstore or WalMart. Good Earth has a brand, others have vit. E. Just info in case some of you have the same problem. Prayers and thoughts for you and yours, Candy K. - Original Message - From: Akua a...@artfarm.com To: tmic-list@eskimo.com Sent: Friday, April 24, 2009 12:03:49 AM GMT -05:00 US/Canada Eastern Subject: Re: [TMIC] T.e.n.s. Unit Wow! Wow! Thank you for the information and insight! I got one from Dr./insurance didn't cover $250. I went on Ebay and Amazon - cost 29.99 up. I got 2 at the cost of $39.99 ea. plus shipping. They do as good as the Dr/insurance type just not as fancy - the difference is name and prescription. Besides, I can get the pads and extra wires on Ebay at a fraction of the cost of the Dr/insurance type which only takes their type of pad wires. Prayers and thoughts for you and yours, Candy K. - Original Message - From: Akua a...@artfarm.com To: tmic-list@eskimo.com Sent: Thursday, April 23, 2009 10:20:55 PM GMT -05:00 US/Canada Eastern Subject: Re: [TMIC] T.e.n.s. Unit No one dismissed it. I was denied that therapy by a DR. It is on the list of if i hit the lottery. -- -- http://www.akuadesigns.etsy.com http://www.artfarmpaperwworks.etsy.com http://www.akua.artfire.com http://Akuadesigns.ShopHandmade.com http://en.dawanda.com/shop/AkuaDesigns http://www.artfarm.com http://www.absolutearts.com/portfolios/a/akualezli/ http://www.zencrochet.blogspot.com/ http://www.healrecover.blogspot.com http://www.akuahaiku.blogspot.com http://www.akualezli.blogspot.com http://imagecarve.blogspot.com/ http://lowgourmet.blogspot.com
Re: [TMIC]
Janice, I went to John Hopkins and I did meet with Dr. Kerr plus 5 or 6 others. I can't remember all thier names. I was given the same tests - blood, spinal tap mri. Dr. Kerr agreed with the dx BUT he also stated that he thought I had Sjogrens - which rheumotoloist (sp?) confirmed. Dr. Kerr also suspected NMO but so far no more problems BUT my eyes are getting worse. I was terribly nearsighted - almost legally blind, had lasic approx. 10 years ago with good results but now rely on my glasses more and more for distance. I can read at normal distance but beyond arms length, I want/need to wear my glasses to make everything clear. The best thing about going to Hopkins or Mayo is that you get on their list and you can participate in trials. PLUS, you are asked to donate the surplus blood and spinal fluid so that they can be entered in a data bank to help research. Also, I got more peace of mind knowing that I had seen the best in the field and the dx was the same. OH Yes, Dr. Kerr recommended that I take 8 mg of Tizanidin (Zanaflex) 3X a day - BUT that was just too much for me, I wound up sleeping all day night except to get up to potty and sometimes eat. I did lose weight but don't recommend that route. I have cut back to 4mg morning afternoon then 8mg at night. I do sleep for 8 - 10 hours at night and don't have nearly the spasms I did with the old doseage of just 4mg at night! Life is short! Break the rules! Forgive quickly! Kiss slowly! Love truly, Laugh uncontrollably . And never regret anything that made you smile. Prayers and thoughts for you and yours, Candy K. - Original Message - From: Janice jan...@centurytel.net To: transverse myelitis tmic-list@eskimo.com Sent: Thursday, April 23, 2009 11:50:17 PM GMT -05:00 US/Canada Eastern Subject: [TMIC] For those of you who went to Hopkins or Mayo, were they able to help you any more, physically, than your regular doctors from your home town? What would Hopkins or Mayo do that would make any difference in your recovery? Janice
Re: [TMIC] using a T.E.N.S try unit
I was given the option of the implanted stimulator also. BUT, since I'm alleric to so many things AND I had a botched surgery just 3 months before TM came to stay, I was reluctant to have surgery. ALSO, I wasn't certain it would work. SO the TENS seemed like the best solutions and it does help! Prayers and thoughts for you and yours, Candy K. - Original Message - From: Janice jan...@centurytel.net To: CANDIS KALLEY cakal...@embarqmail.com, tmic-list tmic-list@eskimo.com Sent: Thursday, April 23, 2009 11:30:20 PM GMT -05:00 US/Canada Eastern Subject: Re: [TMIC] using a T.E.N.S try unit I don't use a tens. I use spinal cord stimulator that is implanted in my back hip. It stops most of the pain before it reaches my brain telling me that I have pain. Very similar to the tens. It helps with pain and with stamina. Janice - Original Message - From: CANDIS KALLEY To: tmic-list Sent: Thursday, April 23, 2009 6:48 PM Subject: Re: [TMIC] using a T.E.N.S try unit I'm not Marieke and I'm not from Canada but I swear by tens. I know it helps with my back and neck pain level bringing it down a notch or 2. I get out of bed and reach for my tens before even a cup of coffee. I know TENS is not for everyone BUT I think anyone should try it before dismissing it. Prayers and thoughts for you and yours, Candy K. - Original Message - From: Pieter and Heather pieterheat...@shaw.ca To: cjb...@aol.com, tmic-list@eskimo.com Sent: Thursday, April 23, 2009 7:30:22 PM GMT -05:00 US/Canada Eastern Subject: Re: [TMIC] using a T.E.N.S try unit Carol, I'm glad it has helped Jim so much. Marieke also from Canada uses the Tens machine with much success as well. I'm sure she will chime in soon and say the same. It helps a lot of people. Heather in Calgary - Original Message - From: cjb...@aol.com To: tmic-list@eskimo.com Sent: Thursday, April 23, 2009 5:14 PM Subject: [TMIC] using a T.E.N.S try unit Hi friends, I just read the message about being told it was bogus to use an electric shock like device. My husband jim has had TM since May 2005. A church friend who is a physical therapist suggested Jim try it, we had a tens unit from awhile back to help with pain. George told Jim where to place the pads to help the hamstring. In less than a week he went from 20% to 75% movement. Its to early to be sure how much movement he will get, but he is certain its not bogus. We will keep you all posted, carol and jim Big savings on Dell XPS Laptops and Desktops!
Re: [TMIC] Mayo Clinic/Johns Hopkins
Yep! I agree but I learned as a young girl (uhhh, a few years ago :) not to be a back sasser. Makes one into a 'not-so-nice person)! When I was lead nurse before TM and had to do interviews for potential new hire nurses, one of my black and white rules was that there was NOT to be any back stabbing and if it happened, it was rules for instant dismissal. We had a wonderful group of hard working, laughing, and very caring people who didn't have to worry when they left the building that people would talk bad about them and seemed to be a lot happier to come to work. It did happen as people are people but it was nipped quickly and kindly so it turned out pretty darn good. God Bless you, too and sorry for adding so much to your list to read!!! Jeanne ---Original Message--- From: cjb...@aol.com Date: 4/24/2009 8:19:12 AM To: jrush...@columbiaenergyllc.com Subject: Re: [TMIC] Mayo Clinic/Johns Hopkins sassy is good but don't be a back sasser, lay it all out I'm determined to get thru all the TMIC posts today, so much else to do but I am going to try. GOD BLESS carol and jim The Average US Credit Score is 692. See Yours in Just 2 Easy Steps! 11.jpg
Re: [TMIC]
*Hi Janice, * *It's Mayo treatment protocol for NMO that has kept me on my feet and still alive. *What would Hopkins or Mayo do that would make any difference in your recovery?* For me at this point, nothing---it is what it is. Sometimes we just have to bite the bullet, swallow hard, and accept things for what they are. I know that I will have future attacks of TM, blindness, and eventually brain lesions---unless of course, a cure is discovered. I also know that I could die during an acute attack. More than a few of our Advocacy Group members have passed since our launching in 2006. That being said, it is research by the bigger and more prominent facilities, that has allowed me to have the standard of care that I now enjoy. I've got an unbelievable neuro here in PA. I consider myself to be so lucky that he took an active interest in my case, and successfully diagnosed me. He is at the University of Pittsburgh Medical Center, and it is quite prestigious in it's own right. * *I**n the beginning, whenever I was new to all of this, I spent my waking moments grasping at straws. *Maybe they're wrong---they have to be wrong? Maybe if I did this? Maybe if I saw this neuro or that neuro? Maybe if I went to this hospital?* ad infinitum. I quite effectively robbed myself of a good quality of life. I was just too busy wallowing in my own grief at that point. One day, I just made up my mind that I would dedicate myself to learning about this *thing* and helping and educating others. It was the one thing that i could still do at that point. * *This is a rambling post I know, but there is a point. Whenever I decided to get busy doing what I had to do, I started to collect any and all technical papers that I could get my hands on concerning this disease. What I found, was that the bulk of research was coming out of the Mayo Clinic and Japan. I managed to locate other patients nationally and worldwide (And it was not an easy task as NMO is incredibly rare, much more so than TM from other causes.), and discovered that a high percentage of them were Mayo patients. They were diagnosed and placed on treatment protocols, and were experiencing the best degree of stability that could be expected. Now, we always suggest a visit to the Mayo for newly diagnosed patients, or those who are still in the diagnostic process. Their level of expertise is phenomenal. Right now, I am sitting her on pins and needles waiting for the American Academy of Neurology meeting to be completed, as Phase I of the NMO+ Genetic Study that myself and many of our members are participating in, is complete and preliminary results are to be announced at the meeting. My own neuro will be there, but is unable to stay for the entirety, and I cannot wait to see him in a week or two, to find out what the scoop is. The point of all of this is---if you have an opportunity to go to the Mayo or Hopkins, by all means do so. Will you get a different slant on your disease or disorder? Maybe not, maybe all has been done that can be done, but at the very least, you will know that you have been seen by the best, and can put your mind at rest. * *I hope that I haven't offended anyone. * *Grace* * * * * * * * *
Re: [TMIC] Mayo Clinic/Johns Hopkins
Hi, Janice, My doctors were all really good to me and I agree with you in that all they could do was to treat the symptoms. It's really hard to describe what it is that we TMer's are feeling when we talk about hot/cold, acid-like pain, painful spasms, the 'band', and everything else that goes along with it. You had asked in another e-mail about the doctors, in my case John's Hopkins helping more than our own providers. I read about everything Dr. Kerr and others at JH have done and how they have helped so many but I just happened to get someone who didn't which was just the unlucky 'luck of the draw'. There are too many good things happening at JH that I just fell thru the crack. I'm fine as sunshine, tho, so who am I to complain??? ::)) Jeanne ---Original Message--- From: Janice Date: 4/23/2009 10:40:54 PM To: jrushton; Grace M.; tmic Subject: Re: [TMIC] Mayo Clinic/Johns Hopkins Jeanne, I wish I had known about this group from the beginning also. That isolated nobody else has this, feeling is the pits! I think it just gets down to the doctors just don't know much about this disease and since it is so rare and they rarely run into it, I think they just don't want to mess with it. My doctors were very kind to me, so this is not coming from bitterness. Just being realistic. Anyway, that is my opinion. Janice - Original Message - From: jrushton To: Grace M. ; tmic Sent: Thursday, April 23, 2009 7:05 PM Subject: [TMIC] Mayo Clinic/Johns Hopkins Gosh, how I wished I had been part of tmic long enough to have had all of this advice before Jack and I took that long, expensive trip to Johns Hopkins to be seen by a specialist there. I wanted to see Dr. Kerr but they put me with another neurologist that was okay and did a pretty thorough exam but it even could have been better. He had me walk about three feet in the tiny exam room right beside the bed which is not anywhere long enough for those of us who 'walk' in order to really see how we do it! Plus he took down the info on the meds I was taking, hardly said a word, yet in his chart notes (that I received a copy of) he said he 'discussed with me at great length about my taking too much Ibuprofen and Tylenol, etc.' which was absolutely NOT TRUE and had been totally approved by my regular provider!! We sat there in silence so much of our visit and I was wanting him to ask me questions, talk to me, do something. Guess what his diagnosis was??? You got it! Transverse Myelitis! I was just devastated. I went to another neuro prior to that and he did the same sort of tests and gave me the same diagnosis. This was all after I had been originally diagnosed in ICU at Harborview Hospital where I was flown upon the original onset. I sure wished I had had you all the first couple years. It was scary, lonely, and I sure needed you!!! Now, I would do things much differently because of all I know, all I have learned from you all, and I was sassy beforenow, I'm REALLY sassy!!! Jeanne in Dayton ---Original Message--- From: Grace M. Date: 4/23/2009 2:49:27 PM To: Sandy Heidel Cc: tmic-list@eskimo.com Subject: Re: [TMIC] Mayo Clinic Hi Sandy, If you've had the privilege of being seen by Dr. Brian Weinshenker, you've been seen by the best. He's amazing. Not only is he a top notch researcher but he's a compassionate clinician as well. Hugs, Gracie SuperStock_1196-107.jpg
RE: [TMIC]
Grace, Thank you for your post. I find myself longing to go there just to know I have tried everything too, but it is so far and financially out of the question for now. My dreams for big lottery winnings have just changed just a bit from what they used to be. Speaking of dreams, I dreamed I was roller skating last night - it was wonderful and though some may think it silly, it gives me hope. Thanks, Tami _ From: Grace M. [mailto:grace...@gmail.com] Sent: Friday, April 24, 2009 10:11 AM To: Janice Cc: tmic-list@eskimo.com Subject: Re: [TMIC] Hi Janice, It's Mayo treatment protocol for NMO that has kept me on my feet and still alive. *What would Hopkins or Mayo do that would make any difference in your recovery?* For me at this point, nothing---it is what it is. Sometimes we just have to bite the bullet, swallow hard, and accept things for what they are. I know that I will have future attacks of TM, blindness, and eventually brain lesions---unless of course, a cure is discovered. I also know that I could die during an acute attack. More than a few of our Advocacy Group members have passed since our launching in 2006. That being said, it is research by the bigger and more prominent facilities, that has allowed me to have the standard of care that I now enjoy. I've got an unbelievable neuro here in PA. I consider myself to be so lucky that he took an active interest in my case, and successfully diagnosed me. He is at the University of Pittsburgh Medical Center, and it is quite prestigious in it's own right. In the beginning, whenever I was new to all of this, I spent my waking moments grasping at straws. *Maybe they're wrong---they have to be wrong? Maybe if I did this? Maybe if I saw this neuro or that neuro? Maybe if I went to this hospital?* ad infinitum. I quite effectively robbed myself of a good quality of life. I was just too busy wallowing in my own grief at that point. One day, I just made up my mind that I would dedicate myself to learning about this *thing* and helping and educating others. It was the one thing that i could still do at that point. This is a rambling post I know, but there is a point. Whenever I decided to get busy doing what I had to do, I started to collect any and all technical papers that I could get my hands on concerning this disease. What I found, was that the bulk of research was coming out of the Mayo Clinic and Japan. I managed to locate other patients nationally and worldwide (And it was not an easy task as NMO is incredibly rare, much more so than TM from other causes.), and discovered that a high percentage of them were Mayo patients. They were diagnosed and placed on treatment protocols, and were experiencing the best degree of stability that could be expected. Now, we always suggest a visit to the Mayo for newly diagnosed patients, or those who are still in the diagnostic process. Their level of expertise is phenomenal. Right now, I am sitting her on pins and needles waiting for the American Academy of Neurology meeting to be completed, as Phase I of the NMO+ Genetic Study that myself and many of our members are participating in, is complete and preliminary results are to be announced at the meeting. My own neuro will be there, but is unable to stay for the entirety, and I cannot wait to see him in a week or two, to find out what the scoop is. The point of all of this is---if you have an opportunity to go to the Mayo or Hopkins, by all means do so. Will you get a different slant on your disease or disorder? Maybe not, maybe all has been done that can be done, but at the very least, you will know that you have been seen by the best, and can put your mind at rest. I hope that I haven't offended anyone. Grace
RE: [TMIC]
Oh but I love the 70's! Great music! Tami _ From: kimr1...@bellsouth.net [mailto:kimr1...@bellsouth.net] Sent: Friday, April 24, 2009 11:09 AM To: tstree...@abf.com; 'Grace M.'; 'Janice' Cc: Tami Streeter; tmic-list@eskimo.com Subject: RE: [TMIC] ok that is scary, I also dreamed I was roller skating agan (ok it was the 70's and roller disco) but I was moving all over the floor! -- Original message from Tami Streeter tstree...@abf.com: -- Grace, Thank you for your post. I find myself longing to go there just to know I have tried everything too, but it is so far and financially out of the question for now. My dreams for big lottery winnings have just changed just a bit from what they used to be. Speaking of dreams, I dreamed I was roller skating last night - it was wonderful and though some may think it silly, it gives me hope. Thanks, Tami _ From: Grace M. [mailto:grace...@gmail.com] Sent: Friday, April 24, 2009 10:11 AM To: Janice Cc: tmic-list@eskimo.com Subject: Re: [TMIC] Hi Janice, It's Mayo treatment protocol for NMO that has kept me on my feet and still alive. *What would Hopkins or Mayo do that would make any difference in your recovery?* For me at this point, nothing---it is what it is. Sometimes we just have to bite the bullet, swallow hard, and accept things for what they are. I know that I will have future attacks of TM, blindness, and eventually brain lesions---unless of course, a cure is discovered. I also know that I could die during an acute attack. More than a few of our Advocacy Group members have passed since our launching in 2006. That being said, it is research by the bigger and more prominent facilities, that has allowed me to have the standard of care that I now enjoy. I've got an unbelievable neuro here in PA. I consider myself to be so lucky that he took an active interest in my case, and successfully diagnosed me. He is at the University of Pittsburgh Medical Center, and it is quite prestigious in it's own right. In the beginning, whenever I was new to all of this, I spent my waking moments grasping at straws. *Maybe they're wrong---they have to be wrong? Maybe if I did this? Maybe if I saw this neuro or that neuro? Maybe if I went to this hospital?* ad infinitum. I quite effectively robbed myself of a good quality of life. I was just too busy wallowing in my own grief at that point. One day, I just made up my mind that I would dedicate myself to learning about this *thing* and helping and educating others. It was the one thing that i could still do at that point. This is a rambling post I know, but there is a point. Whenever I decided to get busy doing what I had to do, I started to collect any and all technical papers that I could get my hands on concerning this disease. What I found, was that the bulk of research was coming out of the Mayo Clinic and Japan. I managed to locate other patients nationally and worldwide (And it was not an easy task as NMO is incredibly rare, much more so than TM from other causes.), and discovered that a high percentage of them were Mayo patients. They were diagnosed and placed on treatment protocols, and were experiencing the best degree of stability that could be expected. Now, we always suggest a visit to the Mayo for newly diagnosed patients, or those who are still in the diagnostic process. Their level of expertise is phenomenal. Right now, I am sitting her on pins and needles waiting for the American Academy of Neurology meeting to be completed, as Phase I of the NMO+ Genetic Study that myself and many of our members are participating in, is complete and preliminary results are to be announced at the meeting. My own neuro will be there, but is unable to stay for the entirety, and I cannot wait to see him in a week or two, to find out what the scoop is. The point of all of this is---if you have an opportunity to go to the Mayo or Hopkins, by all means do so. Will you get a different slant on your disease or disorder? Maybe not, maybe all has been done that can be done, but at the very least, you will know that you have been seen by the best, and can put your mind at rest. I hope that I haven't offended anyone. Grace
[TMIC] RE: tmic-digest Digest V2009 #339
Hi, I use a TENS and MNES machine (mine is combo, so I can use it either for Pain relief with the TENS or for building muscle with the MNES settings). I got it from a company that sells refurbished or extra medical equipement. The machine I got is worth $800+, I got it for $230. The TENS works well when I have pain, mostly for my lower back and butt. The NMES I used on part of my quad that needed help in building muscle, it worked a bit, I have used it for otehr muscles too and it does work, but you have to use it consistently to build any muscle... Marieke RN (AFTER I got TM!) t...@t1, March 18, 2004. I walk with a long leg brace and use a cane. Date: Fri, 24 Apr 2009 07:48:26 -0700 From: tmic-digest-requ...@eskimo.com Subject: tmic-digest Digest V2009 #339 To: tmic-dig...@eskimo.com --Forwarded Message Attachment-- tmic-digest Digest Volume 2009 : Issue 339 Today's Topics: Re: [TMIC] T.e.n.s. Unit [ CANDIS KALLEY cakal...@embarqmail. ] Re: [TMIC] using a T.E.N.S try unit [ CANDIS KALLEY cakal...@embarqmail. ] Re: [TMIC][ CANDIS KALLEY cakal...@embarqmail. ] --Forwarded Message Attachment-- Date: Fri, 24 Apr 2009 07:48:55 -0400 From: cakal...@embarqmail.com To: tmic-list@eskimo.com Subject: Re: [TMIC] T.e.n.s. Unit I do want to tell you all about the TENS pads and my experience. I am highly allergic to many things especially glue - I need to use paper tape for example. The pads provided with any TENS units caused me to have a rash and hives - VERY uncomfortable. I tried several types of pads - even the hypo-allergic - all with the same result. I think it's the gel used on the pads. SO, I soak the pads in water for 24 and the gel falls off. I then wash the pads several times and dry them. I then use paper tape to re-inforce the stem area around where the connector comes out of the pad otherwise the stem falls out in a couple of days. When I use the pads, I use an aloe gel on the pad - result no more alleric reaction. You can get the aloe gel at any drugstore or WalMart. Good Earth has a brand, others have vit. E. Just info in case some of you have the same problem. Prayers and thoughts for you and yours, Candy K. - Original Message - From: Akua a...@artfarm.com To: tmic-list@eskimo.com Sent: Friday, April 24, 2009 12:03:49 AM GMT -05:00 US/Canada Eastern Subject: Re: [TMIC] T.e.n.s. Unit Wow! Wow! Thank you for the information and insight! I got one from Dr./insurance didn't cover $250. I went on Ebay and Amazon - cost 29.99 up. I got 2 at the cost of $39.99 ea. plus shipping. They do as good as the Dr/insurance type just not as fancy - the difference is name and prescription. Besides, I can get the pads and extra wires on Ebay at a fraction of the cost of the Dr/insurance type which only takes their type of pad wires. Prayers and thoughts for you and yours, Candy K. - Original Message - From: Akua a...@artfarm.com To: tmic-list@eskimo.com Sent: Thursday, April 23, 2009 10:20:55 PM GMT -05:00 US/Canada Eastern Subject: Re: [TMIC] T.e.n.s. Unit No one dismissed it. I was denied that therapy by a DR. It is on the list of if i hit the lottery. -- -- http://www.akuadesigns.etsy.com http://www.artfarmpaperwworks.etsy.com http://www.akua.artfire.com http://Akuadesigns.ShopHandmade.com http://en.dawanda.com/shop/AkuaDesigns http://www.artfarm.com http://www.absolutearts.com/portfolios/a/akualezli/ http://www.zencrochet.blogspot.com/ http://www.healrecover.blogspot.com http://www.akuahaiku.blogspot.com http://www.akualezli.blogspot.com http://imagecarve.blogspot.com/ http://lowgourmet.blogspot.com --Forwarded Message Attachment-- Date: Fri, 24 Apr 2009 07:54:20 -0400 From: cakal...@embarqmail.com To: tmic-list@eskimo.com Subject: Re: [TMIC] using a T.E.N.S try unit I was given the option of the implanted stimulator also. BUT, since I'm alleric to so many things AND I had a botched surgery just 3 months before TM came to stay, I was reluctant to have surgery. ALSO, I wasn't certain it would work. SO the TENS seemed like the best solutions and it does help! Prayers and thoughts for you and yours, Candy K. - Original Message - From: Janice jan...@centurytel.net To: CANDIS KALLEY cakal...@embarqmail.com, tmic-list tmic-list@eskimo.com Sent: Thursday, April 23, 2009 11:30:20 PM GMT -05:00 US/Canada Eastern Subject: Re: [TMIC] using a T.E.N.S try unit I don't use a tens. I use spinal cord stimulator that is implanted in my back hip. It stops most of the pain before it reaches my brain telling me that I have pain. Very similar to the tens. It helps with pain and with stamina. Janice - Original Message - From: CANDIS KALLEY To: tmic-list Sent: Thursday, April 23, 2009 6:48 PM Subject: Re: [TMIC] using a T.E.N.S try unit I'm not Marieke and I'm not from Canada but I swear by tens. I know it helps
RE: [TMIC]
ok that is scary, I also dreamed I was roller skating agan (ok it was the 70's and roller disco) but I was moving all over the floor! -- Original message from "Tami Streeter" tstree...@abf.com: -- Grace, Thank you for your post. I find myself longing to go there just to know I have tried everything too, but it is so far and financially out of the question for now. My dreams for “big lottery winnings” have just changed just a bit from what they used to be. Speaking of dreams, I dreamed I was roller skating last night – it was wonderful and though some may think it silly, it gives me hope. Thanks, Tami From: Grace M. [mailto:grace...@gmail.com] Sent: Friday, April 24, 2009 10:11 AMTo: JaniceCc: tmic-list@eskimo.comSubject: Re: [TMIC] Hi Janice, It's Mayo treatment protocol for NMO that has kept me on my feet and still alive. *What would Hopkins or Mayodo that would make any difference in your recovery?* For me at this point, nothing---it is what it is. Sometimes we just have to bite the bullet, swallow hard, and accept things for what they are. I know that I will have future attacks of TM, blindness, and eventually brain lesions---unless of course, a cure is discovered. I also know that I could die during an acute attack. More than a few of our Advocacy Group members have passed since our launching in 2006. That being said, it is research by the bigger and more prominent facilities,that has allowed me to have the standard of care that I now enjoy. I've got an unbelievable neuro here in PA. I consider myself to be so luckythat he took an active interest in my case, and successfully diagnosed me. He is at the University of Pittsburgh Medical Center, and it is quite prestigious in it'sown right. In the beginning, whenever I was new to all of this, I spent my waking moments grasping at straws. *Maybe they're wrong---they have to be wrong? Maybe if I did this? Maybe if Isaw this neuroor that neuro?Maybe if I went to this hospital?* ad infinitum. I quite effectively robbed myself of a good quality of life. I was just too busy wallowing in my own grief at that point. One day, I just made up my mind that I would dedicate myself to learning about this *thing* and helping and educating others.It was the one thing that i could still do at that point. This is a rambling post I know, but there is a point. Whenever I decided to get busy doing what I had to do, I started to collect any and all technical papers thatI couldget my hands onconcerning this disease. What I found, was that the bulk of research was coming out of the Mayo Clinicand Japan. I managed to locate other patients nationally and worldwide(Andit was not an easy task as NMO is incredibly rare,much more so than TM from other causes.), and discovered that a high percentage of them were Mayo patients.They were diagnosed and placed on treatment protocols, and wereexperiencing the best degree of stability that could be expected. Now, we always suggest a visit to the Mayo for newly diagnosed patients, or those who are still in the diagnostic process. Their level of expertise is phenomenal. Right now, I am sitting her on pins and needles waiting for the American Academy of Neurology meeting to be completed, as PhaseI of the NMO+ Genetic Study that myself and many of our members are participating in, is complete and preliminary results are tobe announced at the meeting. My own neuro will be there, but is unable to stay for the entirety, andI cannot wait to see him in a week or two, to find out what the scoop is.The point of all of this is---if you have an opportunity to go to the Mayo or Hopkins, by all means do so. Will you get a different slant on your disease or disorder? Maybe not, maybe all has been done that can be done, butat the very least, you will know that you have been seen by the best, and can put your mind at rest. I hope that I haven't offended anyone. Grace
[TMIC] TEST
It appears my posts are not going thru...can you let me know if you receive this. Thx Rob in New Jersey
Re: [TMIC] TEST
I received your post. Life is short! Break the rules! Forgive quickly! Kiss slowly! Love truly, Laugh uncontrollably . And never regret anything that made you smile. Prayers and thoughts for you and yours, Candy K. - Original Message - From: Robert Pall rp...@neillsupply.com To: tmic tmic-list@eskimo.com Sent: Friday, April 24, 2009 2:09:30 PM GMT -05:00 US/Canada Eastern Subject: [TMIC] TEST It appears my posts are not going thru…can you let me know if you receive this. Thx Rob in New Jersey
[TMIC] misc
I tried sending this with an attachment and it did not go thru...I am trying it again with a cut and paste and hopefully the group will receive it! I have been reading all of the many posts many of which are heartbreaking. I can only relate to my own personal experiences. First of all living in a large urban area where access to excellent medical facilities are in abunbdance helped me. Within 24 hours I was taking 1000 mg per day of prednisone (steroids) which I believe limited the damage to my spine. After going to numerous Drs, physical therapists and even chiropractors I came to realize that after passing the one year mark I would not get much better. Ten years ago I started seeing Dr. Kerr and have done so once annually since then. He gives me very little hope of a cure in the near future but he does treat my symptoms (banding,hot/cold,numbness etc,)I therefore view my condition as one requiring pain managemnt vs a cure. I think acceptance of our condition is imperative...I try every day to not let TM dictate my life. TM has not reduced my bucket list it has simply made me make some adjustments due to what I am capable of doing physically. What make this group (as well as my New Jersey support group) so special is that we are discussing our problems and limitations with people who understand and are eager to pass on their own sucesses in order to help all of us. It appears that recently this site is doing exactly what it is meant to do...post questions,get answers and help us to all remember we are not alone. I recently posted an essay I wrote (for no reason except I wanted to put down on paper what I could not or would not speak aloud). The title of the essay is normal. I am attaching it to this email for the new members and the ones who have not previously read it. I encourage all of you to put down on paper your feelings regarding TM...and hopefully by doing that it helps put our head in the right direction. Life is short...do everything you can to live it to its fullest...TM is a challenge and the ones that handle it best I believe have acquired some acceptance. OK that is more than enough for one writing! All the best! Rob in New Jersey NORMAL Normalwhat a simple word! This is a word I took for granted until one week past my 50th birthday. What did normal mean to me? Normal meant being like everyone elseit was being able to run, walk, exercise, climb up stairs, play sports...basically being able to do everything that normal people do without giving it a thought. I guess I figured as I got older I would slow down a little...maybe replace basketball with golf. Perhaps I would have to exercise a little longer to stay in shape...no big deal...this was normal. Sure like all normal people I would get sick from time to time and maybe break a bone or twobut I always knew that I would get better...and until one week after my 50th birthday that was just how life was...normal. Now let us go back 11 or so years where in a period of several hours I went from normal to cripple. In a few hours I had zero feeling from my waist downthat can't be possible...I had played ball all weekend...there had to be a simple answer. Maybe a pinched nerve or something like that.the idea that I would never be normal again never crossed my mind...I was sure it would be just a matter of time until I was all better...and normal again . Even after 3 MRI's and 2 Lumbar Punctures I was certain that Dr. House would figure out the problem, give me some medicine and I would be all better...I would be normal again...just like everybody else I knew. Three weeks after being crippled from the waist down I was told what I have.Transverse Myelitiswhat the heck is that...I never heard the words before and had no idea of their meaning. The Neurologist at the top New York City hospital explained it to me...he said he was sure I would eventually walk again...but he could not say for sure what assistance I would need. Perhaps a walker (how embarrassing), maybe a quad cane (better but not great) and if I was lucky perhaps I could graduate to a straight cane (better but not normal) After spending 3 weeks in the hospital I was transferred to the Kessler Rehabilitation facility in West Orange, New Jersey (same place Christopher Reeves rehabbed in). Slowly over a period of 3 months I started getting a little better...I went from a walker to a quad cane to upon leaving the rehab center a straight caneI was surely getting better. I would prove all of the doctors wrong.oh just one little side note...while it was true that I was learning to walk better there also came some small side effects. When I first came down with TM I had no feeling and therefore I had no pain or discomfortbut...as some feeling came back these feelings were so so bad. Where previously I felt nothing...now one of my legs was pins and needles and numb (how is that possible?)...whereas my other
[TMIC] TM misc
I tried sending this with an attachment and it did not go thru...I am trying it again with a cut and paste and hopefully the group will receive it! I have been reading all of the many posts many of which are heartbreaking. I can only relate to my own personal experiences. First of all living in a large urban area where access to excellent medical facilities are in abunbdance helped me. Within 24 hours I was taking 1000 mg per day of prednisone (steroids) which I believe limited the damage to my spine. After going to numerous Drs, physical therapists and even chiropractors I came to realize that after passing the one year mark I would not get much better. Ten years ago I started seeing Dr. Kerr and have done so once annually since then. He gives me very little hope of a cure in the near future but he does treat my symptoms (banding,hot/cold,numbness etc,)I therefore view my condition as one requiring pain managemnt vs a cure. I think acceptance of our condition is imperative...I try every day to not let TM dictate my life. TM has not reduced my bucket list it has simply made me make some adjustments due to what I am capable of doing physically. What make this group (as well as my New Jersey support group) so special is that we are discussing our problems and limitations with people who understand and are eager to pass on their own sucesses in order to help all of us. It appears that recently this site is doing exactly what it is meant to do...post questions,get answers and help us to all remember we are not alone. I recently posted an essay I wrote (for no reason except I wanted to put down on paper what I could not or would not speak aloud). The title of the essay is normal. I am attaching it to this email for the new members and the ones who have not previously read it. I encourage all of you to put down on paper your feelings regarding TM...and hopefully by doing that it helps put our head in the right direction. Life is short...do everything you can to live it to its fullest...TM is a challenge and the ones that handle it best I believe have acquired some acceptance. OK that is more than enough for one writing! All the best! Rob in New Jersey NORMAL Normalwhat a simple word! This is a word I took for granted until one week past my 50th birthday. What did normal mean to me? Normal meant being like everyone elseit was being able to run, walk, exercise, climb up stairs, play sports...basically being able to do everything that normal people do without giving it a thought. I guess I figured as I got older I would slow down a little...maybe replace basketball with golf. Perhaps I would have to exercise a little longer to stay in shape...no big deal...this was normal. Sure like all normal people I would get sick from time to time and maybe break a bone or twobut I always knew that I would get better...and until one week after my 50th birthday that was just how life was...normal. Now let us go back 11 or so years where in a period of several hours I went from normal to cripple. In a few hours I had zero feeling from my waist downthat can't be possible...I had played ball all weekend...there had to be a simple answer. Maybe a pinched nerve or something like that.the idea that I would never be normal again never crossed my mind...I was sure it would be just a matter of time until I was all better...and normal again . Even after 3 MRI's and 2 Lumbar Punctures I was certain that Dr. House would figure out the problem, give me some medicine and I would be all better...I would be normal again...just like everybody else I knew. Three weeks after being crippled from the waist down I was told what I have.Transverse Myelitiswhat the heck is that...I never heard the words before and had no idea of their meaning. The Neurologist at the top New York City hospital explained it to me...he said he was sure I would eventually walk again...but he could not say for sure what assistance I would need. Perhaps a walker (how embarrassing), maybe a quad cane (better but not great) and if I was lucky perhaps I could graduate to a straight cane (better but not normal) After spending 3 weeks in the hospital I was transferred to the Kessler Rehabilitation facility in West Orange, New Jersey (same place Christopher Reeves rehabbed in). Slowly over a period of 3 months I started getting a little better...I went from a walker to a quad cane to upon leaving the rehab center a straight caneI was surely getting better. I would prove all of the doctors wrong.oh just one little side note...while it was true that I was learning to walk better there also came some small side effects. When I first came down with TM I had no feeling and therefore I had no pain or discomfortbut...as some feeling came back these feelings were so so bad. Where previously I felt nothing...now one of my legs was pins and needles and numb (how is that possible?)...whereas my other
RE: [TMIC] misc
Thank you for sharing. And well said. From: Robert Pall [mailto:rp...@neillsupply.com] Sent: April-24-09 12:24 PM To: tmic Subject: [TMIC] misc I tried sending this with an attachment and it did not go thru.I am trying it again with a cut and paste and hopefully the group will receive it! I have been reading all of the many posts many of which are heartbreaking. I can only relate to my own personal experiences. First of all living in a large urban area where access to excellent medical facilities are in abunbdance helped me. Within 24 hours I was taking 1000 mg per day of prednisone (steroids) which I believe limited the damage to my spine. After going to numerous Drs, physical therapists and even chiropractors I came to realize that after passing the one year mark I would not get much better. Ten years ago I started seeing Dr. Kerr and have done so once annually since then. He gives me very little hope of a cure in the near future but he does treat my symptoms (banding,hot/cold,numbness etc,)I therefore view my condition as one requiring pain managemnt vs a cure. I think acceptance of our condition is imperative...I try every day to not let TM dictate my life. TM has not reduced my bucket list it has simply made me make some adjustments due to what I am capable of doing physically. What make this group (as well as my New Jersey support group) so special is that we are discussing our problems and limitations with people who understand and are eager to pass on their own sucesses in order to help all of us. It appears that recently this site is doing exactly what it is meant to do...post questions,get answers and help us to all remember we are not alone. I recently posted an essay I wrote (for no reason except I wanted to put down on paper what I could not or would not speak aloud). The title of the essay is normal. I am attaching it to this email for the new members and the ones who have not previously read it. I encourage all of you to put down on paper your feelings regarding TM...and hopefully by doing that it helps put our head in the right direction. Life is short...do everything you can to live it to its fullest...TM is a challenge and the ones that handle it best I believe have acquired some acceptance. OK that is more than enough for one writing! All the best! Rob in New Jersey NORMAL Normal..what a simple word! This is a word I took for granted until one week past my 50th birthday. What did normal mean to me? Normal meant being like everyone else..it was being able to run, walk, exercise, climb up stairs, play sports.basically being able to do everything that normal people do without giving it a thought. I guess I figured as I got older I would slow down a little.maybe replace basketball with golf. Perhaps I would have to exercise a little longer to stay in shape.no big deal.this was normal. Sure like all normal people I would get sick from time to time and maybe break a bone or two..but I always knew that I would get better.and until one week after my 50th birthday that was just how life was.normal. Now let us go back 11 or so years where in a period of several hours I went from normal to cripple. In a few hours I had zero feeling from my waist down..that can't be possible.I had played ball all weekend.there had to be a simple answer. Maybe a pinched nerve or something like that...the idea that I would never be normal again never crossed my mind.I was sure it would be just a matter of time until I was all better.and normal again . Even after 3 MRI's and 2 Lumbar Punctures I was certain that Dr. House would figure out the problem, give me some medicine and I would be all better.I would be normal again.just like everybody else I knew. Three weeks after being crippled from the waist down I was told what I have...Transverse Myelitis..what the heck is that.I never heard the words before and had no idea of their meaning. The Neurologist at the top New York City hospital explained it to me.he said he was sure I would eventually walk again.but he could not say for sure what assistance I would need. Perhaps a walker (how embarrassing), maybe a quad cane (better but not great) and if I was lucky perhaps I could graduate to a straight cane (better but not normal) After spending 3 weeks in the hospital I was transferred to the Kessler Rehabilitation facility in West Orange, New Jersey (same place Christopher Reeves rehabbed in). Slowly over a period of 3 months I started getting a little better.I went from a walker to a quad cane to upon leaving the rehab center a straight cane..I was surely getting better. I would prove all of the doctors wrong...oh just one little side note.while it was true that I was learning to walk better there also came some small side effects. When I first came down with TM I had no feeling and therefore I had no pain or discomfort..but.as some feeling came back these feelings were so so bad. Where previously I
Re: [TMIC] misc
*Hello Rob, * ** *What a wonderful post. Thank you. No one could have said it better.* ** *Gracie (NMO+ since 2005)*
Re: [TMIC] TM misc
Robert, What a wonderful to put normal and our condition. So much of what you wrote I've felt and I believe all of us have felt. I think it is wonderful that you can still work. Life is short! Break the rules! Forgive quickly! Kiss slowly! Love truly, Laugh uncontrollably . And never regret anything that made you smile. Prayers and thoughts for you and yours, Candy K. - Original Message - From: Robert Pall rp...@neillsupply.com To: tmic tmic-list@eskimo.com Sent: Friday, April 24, 2009 2:27:41 PM GMT -05:00 US/Canada Eastern Subject: [TMIC] TM misc I tried sending this with an attachment and it did not go thru…I am trying it again with a cut and paste and hopefully the group will receive it! I have been reading all of the many posts many of which are heartbreaking. I can only relate to my own personal experiences. First of all living in a large urban area where access to excellent medical facilities are in abunbdance helped me. Within 24 hours I was taking 1000 mg per day of prednisone (steroids) which I believe limited the damage to my spine. After going to numerous Drs, physical therapists and even chiropractors I came to realize that after passing the one year mark I would not get much better. Ten years ago I started seeing Dr. Kerr and have done so once annually since then. He gives me very little hope of a cure in the near future but he does treat my symptoms (banding,hot/cold,numbness etc,)I therefore view my condition as one requiring pain managemnt vs a cure. I think acceptance of our condition is imperative...I try every day to not let TM dictate my life. TM has not reduced my bucket list it has simply made me make some adjustments due to what I am capable of doing physically. What make this group (as well as my New Jersey support group) so special is that we are discussing our problems and limitations with people who understand and are eager to pass on their own sucesses in order to help all of us. It appears that recently this site is doing exactly what it is meant to do...post questions,get answers and help us to all remember we are not alone. I recently posted an essay I wrote (for no reason except I wanted to put down on paper what I could not or would not speak aloud). The title of the essay is normal. I am attaching it to this email for the new members and the ones who have not previously read it. I encourage all of you to put down on paper your feelings regarding TM...and hopefully by doing that it helps put our head in the right direction. Life is short...do everything you can to live it to its fullest...TM is a challenge and the ones that handle it best I believe have acquired some acceptance. OK that is more than enough for one writing! All the best! Rob in New Jersey NORMAL Normal….what a simple word! This is a word I took for granted until one week past my 50 th birthday. What did normal mean to me? Normal meant being like everyone else….it was being able to run, walk, exercise, climb up stairs, play sports…basically being able to do everything that “normal” people do without giving it a thought. I guess I figured as I got older I would slow down a little…maybe replace basketball with golf. Perhaps I would have to exercise a little longer to stay in shape…no big deal…this was “normal”. Sure like all normal people I would get sick from time to time and maybe break a bone or two….but I always knew that I would get better…and until one week after my 50 th birthday that was just how life was…normal. Now let us go back 11 or so years where in a period of several hours I went from “normal” to cripple. In a few hours I had zero feeling from my waist down….that can’t be possible…I had played ball all weekend…there had to be a simple answer. Maybe a pinched nerve or something like that…..the idea that I would never be normal again never crossed my mind…I was sure it would be just a matter of time until I was all better…and “normal again “. Even after 3 MRI’s and 2 Lumbar Punctures I was certain that Dr. House would figure out the problem, give me some medicine and I would be all better…I would be normal again…just like everybody else I knew. Three weeks after being crippled from the waist down I was told what I have…..Transverse Myelitis….what the heck is that…I never heard the words before and had no idea of their meaning. The Neurologist at the top New York City hospital explained it to me…he said he was sure I would eventually walk again…but he could not say for sure what assistance I would need. Perhaps a walker (how embarrassing), maybe a quad cane (better but not great) and if I was lucky perhaps I could graduate to a straight cane (better but not normal) After spending 3 weeks in the hospital I was transferred to the Kessler Rehabilitation facility in West Orange, New Jersey (same place Christopher Reeves rehabbed in). Slowly over a
Re: [TMIC] TM misc
How blessed we all are to have each other and Rob pretty much has been able to put it into such beautiful words.. Jeanne ---Original Message--- From: Robert Pall Date: 4/24/2009 1:28:08 PM To: tmic Subject: [TMIC] TM misc I tried sending this with an attachment and it did not go thru I am trying it again with a cut and paste and hopefully the group will receive it! I have been reading all of the many posts many of which are heartbreaking. I can only relate to my own personal experiences. First of all living in a large urban area where access to excellent medical facilities are in abunbdance helped me. Within 24 hours I was taking 1000 mg per day of prednisone (steroids) which I believe limited the damage to my spine. After going to numerous Drs, physical therapists and even chiropractors I came to realize that after passing the one year mark I would not get much better. Ten years ago I started seeing Dr. Kerr and have done so once annually since then. He gives me very little hope of a cure in the near future but he does treat my symptoms (banding,hot/cold,numbness etc,)I therefore view my condition as one requiring pain managemnt vs a cure. I think acceptance of our condition is imperative...I try every day to not let TM dictate my life. TM has not reduced my bucket list it has simply made me make some adjustments due to what I am capable of doing physically. What make this group (as well as my New Jersey support group) so special is that we are discussing our problems and limitations with people who understand and are eager to pass on their own sucesses in order to help all of us. It appears that recently this site is doing exactly what it is meant to do.. post questions,get answers and help us to all remember we are not alone. I recently posted an essay I wrote (for no reason except I wanted to put down on paper what I could not or would not speak aloud). The title of the essay is normal. I am attaching it to this email for the new members and the ones who have not previously read it. I encourage all of you to put down on paper your feelings regarding TM...and hopefully by doing that it helps put our head in the right direction. Life is short...do everything you can to live it to its fullest...TM is a challenge and the ones that handle it best I believe have acquired some acceptance. OK that is more than enough for one writing! All the best! Rob in New Jersey NORMAL Normal .what a simple word! This is a word I took for granted until one week past my 50th birthday. What did normal mean to me? Normal meant being like everyone else .it was being able to run, walk, exercise, climb up stairs, play sports basically being able to do everything that normal people do without giving it a thought. I guess I figured as I got older I would slow down a little maybe replace basketball with golf. Perhaps I would have to exercise a little longer to stay in shape no big deal this was normal. Sure like all normal people I would get sick from time to time and maybe break a bone or two .but I always knew that I would get better and until one week after my 50th birthday that was just how life was normal. Now let us go back 11 or so years where in a period of several hours I went from normal to cripple. In a few hours I had zero feeling from my waist down .that cant be possible I had played ball all weekend there had to be a simple answer. Maybe a pinched nerve or something like that ..the idea that I would never be normal again never crossed my mind I was sure it would be just a matter of time until I was all better and normal again . Even after 3 MRIs and 2 Lumbar Punctures I was certain that Dr. House would figure out the problem, give me some medicine and I would be all better I would be normal again just like everybody else I knew. Three weeks after being crippled from the waist down I was told what I have ..Transverse Myelitis .what the heck is that I never heard the words before and had no idea of their meaning. The Neurologist at the top New York City hospital explained it to me he said he was sure I would eventually walk again but he could not say for sure what assistance I would need. Perhaps a walker (how embarrassing), maybe a quad cane (better but not great) and if I was lucky perhaps I could graduate to a straight cane (better but not normal) After spending 3 weeks in the hospital I was transferred to the Kessler Rehabilitation facility in West Orange, New Jersey (same place Christopher Reeves rehabbed in). Slowly over a period of 3 months I started getting a little better I went from a walker to a quad cane to upon leaving the rehab center a straight cane .I was surely getting better. I would prove all of the doctors wrong ..oh just one little side note while it was true that I was learning to walk better there also came some small side effects. When I first came down with TM I had no feeling and therefore I had no pain or discomfort .but
[TMIC] Newbies other women
Here are the shoes/sandles that I find I can wear - and they are on sale. http://www.carolwrightgifts.com/Shoes-Slippers/Womens-Shoes/Stretch-Comfort-Sandals/55400.cfm Prayers and thoughts for you and yours, Candy K.
Re: [TMIC] TEST
yes you are getting through **The Average US Credit Score is 692. See Yours in Just 2 Easy Steps!(http://pr.atwola.com/promoclk/100126575x1221421330x1201417418/aol?redi r=http://www.freecreditreport.com/pm/default.aspx?sc=668072hmpgID=62bcd=Ap rilAvgfooter424NO62)
[TMIC] test
Am I getting through?
Re: [TMIC] test
You are here! Life is short! Break the rules! Forgive quickly! Kiss slowly! Love truly, Laugh uncontrollably . And never regret anything that made you smile. Prayers and thoughts for you and yours, Candy K. - Original Message - From: Catherine camoa...@yahoo.com To: Transverse Mylitis Group tmic-list@eskimo.com Sent: Friday, April 24, 2009 9:36:12 PM GMT -05:00 US/Canada Eastern Subject: [TMIC] test Am I getting through?
Re: [TMIC] Newbies other women
Does anyone know of good shoes to wear with an AFO? I can't find anything but tennis shoes to wear with them. - Original Message - From: CANDIS KALLEY cakal...@embarqmail.com To: tmic-list tmic-list@eskimo.com Sent: Friday, April 24, 2009 5:22 PM Subject: [TMIC] Newbies other women Here are the shoes/sandles that I find I can wear - and they are on sale. http://www.carolwrightgifts.com/Shoes-Slippers/Womens-Shoes/Stretch-Comfort-Sandals/55400.cfm Prayers and thoughts for you and yours, Candy K.
Re: [TMIC]
Grace M, Thank you for taking the time to answer my questions. I feel kind of ignorant to have to ask this but, what is NMO? How is it different than TM? Janice - Original Message - From: Tami Streeter To: 'Grace M.' ; 'Janice' Cc: tmic-list@eskimo.com Sent: Friday, April 24, 2009 10:53 AM Subject: RE: [TMIC] Grace, Thank you for your post. I find myself longing to go there just to know I have tried everything too, but it is so far and financially out of the question for now. My dreams for big lottery winnings have just changed just a bit from what they used to be. Speaking of dreams, I dreamed I was roller skating last night - it was wonderful and though some may think it silly, it gives me hope. Thanks, Tami -- From: Grace M. [mailto:grace...@gmail.com] Sent: Friday, April 24, 2009 10:11 AM To: Janice Cc: tmic-list@eskimo.com Subject: Re: [TMIC] Hi Janice, It's Mayo treatment protocol for NMO that has kept me on my feet and still alive. *What would Hopkins or Mayo do that would make any difference in your recovery?* For me at this point, nothing---it is what it is. Sometimes we just have to bite the bullet, swallow hard, and accept things for what they are. I know that I will have future attacks of TM, blindness, and eventually brain lesions---unless of course, a cure is discovered. I also know that I could die during an acute attack. More than a few of our Advocacy Group members have passed since our launching in 2006. That being said, it is research by the bigger and more prominent facilities, that has allowed me to have the standard of care that I now enjoy. I've got an unbelievable neuro here in PA. I consider myself to be so lucky that he took an active interest in my case, and successfully diagnosed me. He is at the University of Pittsburgh Medical Center, and it is quite prestigious in it's own right. In the beginning, whenever I was new to all of this, I spent my waking moments grasping at straws. *Maybe they're wrong---they have to be wrong? Maybe if I did this? Maybe if I saw this neuro or that neuro? Maybe if I went to this hospital?* ad infinitum. I quite effectively robbed myself of a good quality of life. I was just too busy wallowing in my own grief at that point. One day, I just made up my mind that I would dedicate myself to learning about this *thing* and helping and educating others. It was the one thing that i could still do at that point. This is a rambling post I know, but there is a point. Whenever I decided to get busy doing what I had to do, I started to collect any and all technical papers that I could get my hands on concerning this disease. What I found, was that the bulk of research was coming out of the Mayo Clinic and Japan. I managed to locate other patients nationally and worldwide (And it was not an easy task as NMO is incredibly rare, much more so than TM from other causes.), and discovered that a high percentage of them were Mayo patients. They were diagnosed and placed on treatment protocols, and were experiencing the best degree of stability that could be expected. Now, we always suggest a visit to the Mayo for newly diagnosed patients, or those who are still in the diagnostic process. Their level of expertise is phenomenal. Right now, I am sitting her on pins and needles waiting for the American Academy of Neurology meeting to be completed, as Phase I of the NMO+ Genetic Study that myself and many of our members are participating in, is complete and preliminary results are to be announced at the meeting. My own neuro will be there, but is unable to stay for the entirety, and I cannot wait to see him in a week or two, to find out what the scoop is. The point of all of this is---if you have an opportunity to go to the Mayo or Hopkins, by all means do so. Will you get a different slant on your disease or disorder? Maybe not, maybe all has been done that can be done, but at the very least, you will know that you have been seen by the best, and can put your mind at rest. I hope that I haven't offended anyone. Grace
Re: [TMIC] TEST
TESTGot your email. Keep your posts going through so we can hear from you. Janice - Original Message - From: Robert Pall To: tmic Sent: Friday, April 24, 2009 1:09 PM Subject: [TMIC] TEST It appears my posts are not going thru.can you let me know if you receive this. Thx Rob in New Jersey
Re: [TMIC] test
Yes you are! Don't remember hearing from you before. If you are new, welcome. If not, glad you got through to us. Janice - Original Message - From: Catherine To: Transverse Mylitis Group Sent: Friday, April 24, 2009 8:36 PM Subject: [TMIC] test Am I getting through?
Re: [TMIC]
Thank you for replying. I live in a medical center and feel these doctors have done everything they can. I do think the proper medication and physical therapy is extremely important.I think we all are doing the best we can and the rest is up to the Almighty. Janice - Original Message - From: CANDIS KALLEY To: tmic-list Cc: Janice Sent: Friday, April 24, 2009 7:25 AM Subject: Re: [TMIC] Janice, I went to John Hopkins and I did meet with Dr. Kerr plus 5 or 6 others. I can't remember all thier names. I was given the same tests - blood, spinal tap mri. Dr. Kerr agreed with the dx BUT he also stated that he thought I had Sjogrens - which rheumotoloist (sp?) confirmed. Dr. Kerr also suspected NMO but so far no more problems BUT my eyes are getting worse. I was terribly nearsighted - almost legally blind, had lasic approx. 10 years ago with good results but now rely on my glasses more and more for distance. I can read at normal distance but beyond arms length, I want/need to wear my glasses to make everything clear. The best thing about going to Hopkins or Mayo is that you get on their list and you can participate in trials. PLUS, you are asked to donate the surplus blood and spinal fluid so that they can be entered in a data bank to help research. Also, I got more peace of mind knowing that I had seen the best in the field and the dx was the same. OH Yes, Dr. Kerr recommended that I take 8 mg of Tizanidin (Zanaflex) 3X a day - BUT that was just too much for me, I wound up sleeping all day night except to get up to potty and sometimes eat. I did lose weight but don't recommend that route. I have cut back to 4mg morning afternoon then 8mg at night. I do sleep for 8 - 10 hours at night and don't have nearly the spasms I did with the old doseage of just 4mg at night! Life is short! Break the rules! Forgive quickly! Kiss slowly! Love truly, Laugh uncontrollably . And never regret anything that made you smile. Prayers and thoughts for you and yours, Candy K. - Original Message - From: Janice jan...@centurytel.net To: transverse myelitis tmic-list@eskimo.com Sent: Thursday, April 23, 2009 11:50:17 PM GMT -05:00 US/Canada Eastern Subject: [TMIC] For those of you who went to Hopkins or Mayo, were they able to help you any more, physically, than your regular doctors from your home town?What would Hopkins or Mayo do that would make any difference in your recovery? Janice
Re: [TMIC] test
Hi Janice, Thank you for replying. I actually Have been around for several years ... I tend to be on the quiet side. Thoughts and Prayers, Catherine --- On Fri, 4/24/09, Janice jan...@centurytel.net wrote: From: Janice jan...@centurytel.net Subject: Re: [TMIC] test To: camoa...@yahoo.com, Transverse Mylitis Group tmic-list@eskimo.com Date: Friday, April 24, 2009, 11:28 PM Yes you are! Don't remember hearing from you before. If you are new, welcome. If not, glad you got through to us. Janice - Original Message - From: Catherine To: Transverse Mylitis Group Sent: Friday, April 24, 2009 8:36 PM Subject: [TMIC] test Am I getting through?
Re: [TMIC] Newbies other women
Melissa, I strictly wear BORN shoes. Give them a try, and then you decide. Catherine --- On Fri, 4/24/09, Melissa B mizbr...@charter.net wrote: From: Melissa B mizbr...@charter.net Subject: Re: [TMIC] Newbies other women To: CANDISKALLEY cakal...@embarqmail.com, tmic-list tmic-list@eskimo.com Date: Friday, April 24, 2009, 9:54 PM Does anyone know of good shoes to wear with an AFO? I can't find anything but tennis shoes to wear with them. - Original Message - From: CANDIS KALLEY cakal...@embarqmail.com To: tmic-list tmic-list@eskimo.com Sent: Friday, April 24, 2009 5:22 PM Subject: [TMIC] Newbies other women Here are the shoes/sandles that I find I can wear - and they are on sale. http://www.carolwrightgifts.com/Shoes-Slippers/Womens-Shoes/Stretch-Comfort-Sandals/55400.cfm Prayers and thoughts for you and yours, Candy K.
