Re: [TMIC] Lesions and Myelin Regeneration
In my original post I did not state that there would be no imporvement after
the two year mark. With TM most of the improvements take place in the first
two years. After that any improvement is slower and less noticable. I would
not want anyone to give up hope. Our TM website founder Jim Lubin is actually
not able to move a finger after being paralized for years.
--- On Wed, 3/10/10, Janice Nichols jan...@centurytel.net wrote:
From: Janice Nichols jan...@centurytel.net
Subject: Re: [TMIC] Lesions and Myelin Regeneration
To: Robert Pall rp...@neillsupply.com, Jan Hargrove
jmh1...@sbcglobal.net, lynne myers lynnemye...@yahoo.com, tmic
tmic-list@eskimo.com
Date: Wednesday, March 10, 2010, 9:33 PM
#yiv467152389 DIV {
MARGIN:0px;}
Wasn't going to chime in any more on this subject, but Rob, you really have
nailed the mindset we all need to have to continue to live our lives and show
improvement. Without it, we are lost to this #!*%# disease!
Janice
From: Robert Pall
Sent: Wednesday, March 10, 2010 10:19 AM
To: Jan Hargrove ; lynne myers ; tmic
Subject: RE: [TMIC] Lesions and Myelin Regeneration
As someone who has had TM for close to 13 years I thought I too would chime
in on the subject. After 12 years I had a new MRI performed which showed the
lesion exactly as it appeared initially (first spotted in my 3rd MRI at the
onset). While the vast majority of my improvement took place in year one I
would agree with Jan that improvement even though small has continued the past
12 years. I walk,drive and exercise more efficiently than I ever could. I have
found it vital to maintain an exercise regimen in order to not let the rest of
my health go downhill. I swim 3-4 times a week, watch my diet (helps my bowel
problems), have Activa every night...it really works!
I beseech all of you to not give up...I no longer am waiting for the cure
that will make me the way I wasI was 50 when TM hit me and I doubt a cure
is in my future. That being said I do take meds,presently the meds I take
for TM include Lyrica,Cymbata and diazapan. These meds have reduced the
banding,pins and needle and numbness. At this point I only see my Neuro once a
year (presently Dr. Kerr) and I do this to insure myself that I am on the
cutting edge regarding pain management. I try to live life to its fullest and
have never let my condition define who I am. I expect to get a little better
every day I have left to live...this is my mindset and how I deal with
something so difficult to deal with...let alone try to explain it to someone
who has never encountered anyone with our rare condition.
Rob in New Jersey
From: Jan Hargrove [mailto:jmh1...@sbcglobal.net]
Sent: Wednesday, March 10, 2010 10:51 AM
To: lynne myers; tmic
Subject: Re: [TMIC] Lesions and Myelin Regeneration
I do not agree with the two year statement. My doctor never told me that
I wouldn't get well, nor give me a timeline. The only thing he said would
not return was my temperature control. He was right!! AND, I've had
improvements throughout the 14 years tm's been in my lifeno matter
how small, improvement is improvement and gives hope for more to come!!
My 2¢ janh
From: lynne myers lynnemye...@yahoo.com
To: tmic tmic-list@eskimo.com
Sent: Wed, March 10, 2010 6:26:13 AM
Subject: [TMIC] Lesions and Myelin Regeneration
This is a quote from one of the message forum pages on TM website:
Even though the lesion(s) are gone, there may be underlying nerve damage caused
by the inflammation and the fact that the nerves were unprotected once the
myelin got eaten away. The myelin grows back at 1mm a day, so it takes a
while for the body to repair itself, BUT the nerve can remain damaged.
You will know what damage is left at the 2 yr mark. After this you can still
have some recovery but it is very small and unlikely to be very noticeable.
This information is provided by one of the site administrators who is also a
Registered Nurse.
Re: [TMIC] Lesions and Myelin Regeneration
Lynne, I think you meant to write that Jim Lubin is actually 'NOW' able to move a finger after being paralyzed for years. Your e-mail says 'not' instead of 'now'. I hate it when that happens and our fingers hit the wrong key. I do it all the time. However, in this instance it makes such a difference to the meaning you were getting across about Jim. I think he has had TM for 27 years now and just last year was able to move his left thumb on command. There is a video of it too. Heather in Calgary - Original Message - From: lynne myers To: tmic Sent: Thursday, March 11, 2010 5:44 AM Subject: Re: [TMIC] Lesions and Myelin Regeneration In my original post I did not state that there would be no imporvement after the two year mark. With TM most of the improvements take place in the first two years. After that any improvement is slower and less noticable. I would not want anyone to give up hope. Our TM website founder Jim Lubin is actually not able to move a finger after being paralized for years. --- On Wed, 3/10/10, Janice Nichols jan...@centurytel.net wrote: From: Janice Nichols jan...@centurytel.net Subject: Re: [TMIC] Lesions and Myelin Regeneration To: Robert Pall rp...@neillsupply.com, Jan Hargrove jmh1...@sbcglobal.net, lynne myers lynnemye...@yahoo.com, tmic tmic-list@eskimo.com Date: Wednesday, March 10, 2010, 9:33 PM 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
Re: [TMIC] Lesions and Myelin Regeneration
So Sorry I did mean now not not.
--- On Thu, 3/11/10, Pieter and Heather pieterheat...@shaw.ca wrote:
From: Pieter and Heather pieterheat...@shaw.ca
Subject: Re: [TMIC] Lesions and Myelin Regeneration
To: lynne myers lynnemye...@yahoo.com, tmic tmic-list@eskimo.com
Date: Thursday, March 11, 2010, 4:31 PM
Lynne,
I think you meant to write that Jim Lubin is actually 'NOW' able to move a
finger after being paralyzed for years. Your e-mail says 'not' instead of
'now'. I hate it when that happens and our fingers hit the wrong key. I do it
all the time. However, in this instance it makes such a difference to the
meaning you were getting across about Jim. I think he has had TM for 27 years
now and just last year was able to move his left thumb on command. There is a
video of it too.
Heather in Calgary
- Original Message -
From: lynne myers
To: tmic
Sent: Thursday, March 11, 2010 5:44 AM
Subject: Re: [TMIC] Lesions and Myelin Regeneration
In my original post I did not state that there would be no imporvement after
the two year mark. With TM most of the improvements take place in the first
two years. After that any improvement is slower and less noticable. I would
not want anyone to give up hope. Our TM website founder Jim Lubin is actually
not able to move a finger after being paralized for years.
--- On Wed, 3/10/10, Janice Nichols jan...@centurytel.net wrote:
From: Janice Nichols jan...@centurytel.net
Subject: Re: [TMIC] Lesions and Myelin Regeneration
To: Robert Pall rp...@neillsupply.com, Jan Hargrove
jmh1...@sbcglobal.net, lynne myers lynnemye...@yahoo.com, tmic
tmic-list@eskimo.com
Date: Wednesday, March 10, 2010, 9:33 PM
#yiv2080678091 #yiv467152389 DIV {
MARGIN:0px;}
Wasn't going to chime in any more on this subject, but Rob, you really have
nailed the mindset we all need to have to continue to live our lives and show
improvement. Without it, we are lost to this #!*%# disease!
Janice
From: Robert Pall
Sent: Wednesday, March 10, 2010 10:19 AM
To: Jan Hargrove ; lynne myers ; tmic
Subject: RE: [TMIC] Lesions and Myelin Regeneration
As someone who has had TM for close to 13 years I thought I too would chime
in on the subject. After 12 years I had a new MRI performed which showed the
lesion exactly as it appeared initially (first spotted in my 3rd MRI at the
onset). While the vast majority of my improvement took place in year one I
would agree with Jan that improvement even though small has continued the past
12 years. I walk,drive and exercise more efficiently than I ever could. I have
found it vital to maintain an exercise regimen in order to not let the rest of
my health go downhill. I swim 3-4 times a week, watch my diet (helps my bowel
problems), have Activa every night...it really works!
I beseech all of you to not give up...I no longer am waiting for the cure
that will make me the way I wasI was 50 when TM hit me and I doubt a cure
is in my future. That being said I do take meds,presently the meds I take
for TM include Lyrica,Cymbata and diazapan. These meds have reduced the
banding,pins and needle and numbness. At this point I only see my Neuro once a
year (presently Dr. Kerr) and I do this to insure myself that I am on the
cutting edge regarding pain management. I try to live life to its fullest and
have never let my condition define who I am. I expect to get a little better
every day I have left to live...this is my mindset and how I deal with
something so difficult to deal with...let alone try to explain it to someone
who has never encountered anyone with our rare condition.
Rob in New Jersey
From: Jan Hargrove [mailto:jmh1...@sbcglobal.net]
Sent: Wednesday, March 10, 2010 10:51 AM
To: lynne myers; tmic
Subject: Re: [TMIC] Lesions and Myelin Regeneration
I do not agree with the two year statement. My doctor never told me that
I wouldn't get well, nor give me a timeline. The only thing he said would
not return was my temperature control. He was right!! AND, I've had
improvements throughout the 14 years tm's been in my lifeno matter
how small, improvement is improvement and gives hope for more to come!!
My 2¢ janh
From: lynne myers lynnemye...@yahoo.com
To: tmic tmic-list@eskimo.com
Sent: Wed, March 10, 2010 6:26:13 AM
Subject: [TMIC] Lesions and Myelin Regeneration
This is a quote from one of the message forum pages on TM website:
Even though the lesion(s) are gone, there may be underlying nerve damage caused
by the inflammation and the fact that the nerves were unprotected once the
myelin got eaten away. The myelin grows back at 1mm a day, so it takes a
while for the body to repair itself, BUT the nerve can remain damaged.
You will know what damage is left at the 2 yr mark. After this you can still
have some recovery but it is very small and unlikely to be very noticeable.
This information is provided by one of the site administrators who
Re: [TMIC] Lesions and Myelin Regeneration
Rob, you truly are an inspiration and your attitude is one that will pull any of us out of the depressions that we can fall into. I know that I would be better off if I would follow your lead on a more regular basis. I try to be consistent with my exercise regimine, but just can't seem to always get it done. I am doing much better with things though. Boy, I sure feel better when I accomplish the exercise. It also has been so interesting and heart warming to hear about all of the people who have had improvement after the two year point. I too had improvement, and think that it is so great especially for the newbies to know that they may be able to continue to have it as well. It may be that the information needs to be changed to report that there are many who continue to have improvement, or would that create false hopes for people? I really don't know, but we also do not want people to stop feeling that they have a chance for more improvement either. I know that I really stopped doing my therapy as often after the two year mark and I wonder how many people did the same. I still did some to keep strength, but didn't work as hard as I did before in order to gain strength as often. Hugs, Barbara A in Auburn CA -Original Message- From: Robert Pall rp...@neillsupply.com To: Jan Hargrove jmh1...@sbcglobal.net; lynne myers lynnemye...@yahoo.com; tmic tmic-list@eskimo.com Sent: Wed, Mar 10, 2010 8:19 am 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.
[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.
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 * --
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
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.
