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] Lesions and Myelin Regeneration
At about the two year mark, me missus had a second event (this one at C-5,6). It was then that her dx was changed to MS. BobbyJim in Elvisland. From: lynne myers To: tmic Sent: Wednesday, March 10, 2010 6:26 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.
[TMIC] TM and Me
I'm so glad to have found this site. I was diagnosed with TM in October 2008. My battle continues. Jeron o'Hara Rampersad Jeron, Welcome to the tm family!! Sorry you have to be here, but it's the best place to learn more about what's going on with your body!! I can relate to how you felt when you found this site!! I cried when I realized there were others who REALLY knew what was going on with me. That was 14 years ago at the end of April and I still learn things here, altho' I don't write much anymore. Feel free to ask any question you might have and someone will relate to what you need to know. If you haven't already, go to TMA website, sign up (it's free), and you'll then get the Newsletter and a membership list. Again, welcome!! janh
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
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
JAN THANKS FOR THE INPUT. IT IS ALMOST 2 YEARS FOR ME THIS COMING JUNE. YOU HAVE GIVEN ME HOPE THAT IMPROVEMENT IS STILL IN MY FUTURE. I NOTICE SMALL CHANGES EVERY SO OFTEN AND WILL KEEP UP THE HOPE THAT THERE MAY BE MORE TO COME. PATTI - WISCONSIN From: Jan Hargrove [mailto:jmh1...@sbcglobal.net] Sent: Wednesday, March 10, 2010 9:51 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
*After nearly four and a half years, I regained patchy spots of feeling on the bottom of the foot and calf of my right leg. The majority of my trunk and legs are still numb, but this is a definite improvement. I attribute it to my use of Rituxan (For NMO), as late improvements are not unknown with the use of the drug. * ** *Grace * --
[TMIC] Re: [Transverse Myelitis Support] life sure can bite you in the butt!
Reading your notes sure does pull some heart strings! We have four dogs and a cat, all spoiled rotten. We live in the woods so it isn't an issue with this many pets and pets they are. Our little one is a Shih-tzu (sp?) which we've have for about 17 years and is healthy as can be other than being deaf and having cataracts but we know the time is coming where we're going to lose him. He goes around the house several times a day always trying to find me and then lays by my feet. The others are labs which are wonderful and do they ever love us!! Yes, they couldn't be love more by us, either. They give us joy and living with TM, they are also a beautiful ray of happiness. Jeanne in Dayton ---Original Message--- From: CANDIS KALLEY Date: 3/10/2010 11:33:24 AM To: transversemyelitissupp...@yahoogroups.com Subject: Re: [Transverse Myelitis Support] life sure can bite you in the butt! Michelle, so sorry about your 4 legged child. I've lost several in my lifetime and it's always so difficult - just like loosing a family member - the empty feeling, the longing to see and hold them, the mourning for life as it was. Each time it has taken me several months, even years, to add back to my life and get another child. Two years before my TM, I lost my cat of 11 years and then the next year my little dog, Maltese, - 8 months before my TM. When I got out of the hospital after my TM attacks, I really mourned for my dog - he always wanted to snuggle and seemed to sense when I needed him to snuggle. It took me 9 months but I got another Maltese puppy. He has been my therapy, physcially and mentally. Regarding your increase in sympto ms, m ine increases with stress, over doing, being too tired, illness, being too cold or too hot and at times for no reason that I can identify! TM life has a life unto its own! When I go to the store for groceries or get prescriptions or what ever, it takes me a day or two to get back to normal. Moving is VERY stressful even though the move is wanted. You are probably doing more physcially than usual and worrying and fret, even though you don t realize it, which will make your body react in ways as never before. Do see your doctor but your symptoms may be your body trying to tell you to take time to smell the roses and spend some time to let it rest and just be ! I do hope that life gets more quiet and more relaxed and better for you real soon. 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: Ginger Jerez luvznush...@yahoo.com To: transversemyelitissupp...@yahoogroups.com Sent: Tuesday, March 9, 2010 5:33:04 PM GMT -05:00 US/Canada Eastern Subject: Re: [Transverse Myelitis Support] life sure can bite you in the butt! Dearest Michelle, i am sooo sorry to hear about your furry child, i too am mom to a very old companion dog. my heart just breaks for you and your family. i am sure this evening will be rough for all of you. i will say extra prayers for y,all. plz chek yourself over for any signs of infections or anything that could be causing your system to be a bit down...this is when i have the most weakness. i also suffer pain probs w/ collar bone,rt arm both wrists hands...dr says i have injured all these w/arms working too much to compensate for TM legs. this has also caused arthritis in these areas..did not have that b-4 TM. So sorry for your pain (emotional physical). God Bless, your friend, ginger --Original Message-- From: michellehooker66 michellehooke...@yahoo.com To: transversemyelitissupp...@yahoogroups.com Date: Tuesday, March 9, 2010 6:16:54 PM GMT- Subject: [Transverse Myelitis Support] life sure can bite you in the butt! I was just getting ready to go back to Utah to finish up our move and got a late night text from one of my sons. He told me our ten year old dog was unable to walk and could hardly stand. We thought he had a seizure so they crated him and kept him quiet. This morning he is not any better. He either had a stroke or a massive seizure that caused severe damage. My sons are taking him in to the vet at 3:00 to be put to sleep. I had planned to do it after I got back to Ut(I get back Sat.) I feel so bad that this happened before I could take care of him but we did not think he was sick just old. My oldest son(23) is the dogs special person and he is not taking this well at all. My health has ben a little unusuall lately. My hands have gotten weak and I have a hard time opening things and holding on to things. My shoulders also have started bothering me. I will be back in Ohio in 3 weeks and going to see my new Dr. Does anyone else have symptoms with their hands/arms/shoulders. Also My vision has really become blurry. My eyes were just checked 6 weeks ago and we did retinal mapping and they could
RE: [TMIC] Lesions and Myelin Regeneration
I think that the improvement happens. For everybody? Depends. I have found a few improvements in areas, and some worsening in other areas. I take it one day at a time, because as we all know, anything can and usually does happen. But I drag my leg less now, and the intense banding eases up more readily. So I remain ever hopeful. And it has been since July 2004 that I have been afflicted. Janet From: Jan Hargrove [mailto:jmh1...@sbcglobal.net] Sent: March 10, 2010 8:51 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.
[TMIC] TM and Me Terry Parker
Terry had spinal surgery Monday to remove a large calcified disk that was compressing his cord @ T12, (not related to his TM). However, the Neurosurgeon feels that it MAY increase his mobility! He came home from the hospital last night and is doing fairly well, although he certainly feels some pain. This morning when he got up he said that the pain he had been feeling for several months that radiates from his hip down to his leg is gone! We are so very hopeful. St. Paddy's Day marks Terry's 10 year un-birthday of TM. Many of you 'oldtimers' know, that he had no improvement the first 1.5 years, but very, very gradually over the years he improved to where he can now take some steps and is completely independent, with the exception of wheelchair dependent. He is still on Gabapentin, Baclofen and 7 mg of prednisone. Thanks to those of you that sent good wishes, prayers love! Sandy Parker
[TMIC] Re: TM and Me Terry Parker
Hooray!!! That's incredible newsand it couldn't be for any 2 folks!! Sounds like this calls for a jumbo Margarita, right? Hugs, You know who.. Terry had spinal surgery Mondayto remove a large calcified disk that was compressing his cord @ T12, (not related to his TM). However, the Neurosurgeon feels that it MAY increase his mobility! Hecame home from the hospital last night and is doing fairly well, although he certainly feels some pain. This morning when he got up he said that the pain he had been feeling for several months that radiates from his hip down to his leg is gone! We are so very hopeful. St. Paddy's Day marks Terry's 10 year un-birthday of TM. Many of you 'oldtimers' know, that he had no improvement the first 1.5 years, but very, very gradually over the years he improved to where he can now take some steps and is completely independent, with the exception of wheelchair dependent. He is still on Gabapentin, Baclofen and 7 mg of prednisone. Thanks to those of you that sent good wishes, prayers love! Sandy Parker
Re: [TMIC] Re: TM and Me Terry Parker
That is fantastic news!!!He really deserves all the improvement he can get. Keep us informed of his improvement from the surgery. Janice From: Jan Hargrove Sent: Wednesday, March 10, 2010 3:16 PM To: parkersw...@aol.com ; tmic-list@eskimo.com Subject: [TMIC] Re: TM and Me Terry Parker Hooray!!! That's incredible newsand it couldn't be for any 2 folks!! Sounds like this calls for a jumbo Margarita, right? Hugs, You know who.. Terry had spinal surgery Monday to remove a large calcified disk that was compressing his cord @ T12, (not related to his TM). However, the Neurosurgeon feels that it MAY increase his mobility! He came home from the hospital last night and is doing fairly well, although he certainly feels some pain. This morning when he got up he said that the pain he had been feeling for several months that radiates from his hip down to his leg is gone! We are so very hopeful. St. Paddy's Day marks Terry's 10 year un-birthday of TM. Many of you 'oldtimers' know, that he had no improvement the first 1.5 years, but very, very gradually over the years he improved to where he can now take some steps and is completely independent, with the exception of wheelchair dependent. He is still on Gabapentin, Baclofen and 7 mg of prednisone. Thanks to those of you that sent good wishes, prayers love! Sandy Parker
Re: [TMIC] Lesions and Myelin Regeneration
DITTO, Jan!!! Janice From: Janet Dunn Sent: Wednesday, March 10, 2010 12:06 PM To: 'tmic' Subject: RE: [TMIC] Lesions and Myelin Regeneration I think that the improvement happens. For everybody? Depends. I have found a few improvements in areas, and some worsening in other areas. I take it one day at a time, because as we all know, anything can and usually does happen. But I drag my leg less now, and the intense banding eases up more readily. So I remain ever hopeful. And it has been since July 2004 that I have been afflicted. Janet From: Jan Hargrove [mailto:jmh1...@sbcglobal.net] Sent: March 10, 2010 8:51 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
I am at the 3-year mark, and I am definitely experiencing some improvements - even in walking. We can NEVER give up. Janice From: Patricia Cooley Sent: Wednesday, March 10, 2010 10:44 AM To: 'Jan Hargrove' ; 'lynne myers' ; 'tmic' Subject: RE: [TMIC] Lesions and Myelin Regeneration JAN THANKS FOR THE INPUT. IT IS ALMOST 2 YEARS FOR ME THIS COMING JUNE. YOU HAVE GIVEN ME HOPE THAT IMPROVEMENT IS STILL IN MY FUTURE. I NOTICE SMALL CHANGES EVERY SO OFTEN AND WILL KEEP UP THE HOPE THAT THERE MAY BE MORE TO COME. PATTI - WISCONSIN From: Jan Hargrove [mailto:jmh1...@sbcglobal.net] Sent: Wednesday, March 10, 2010 9:51 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
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] TM and Me Terry Parker
I AM S HAPPY FOR YOU. HOPE THE PAIN IS GONE FOR GOOD. JANE/SPLENDORA TX
