RE: [TMIC] Lesions
Initially I had no feeling whatsoever from the waist downand it stayed that way for 2-3 months. When some feeling started to return my main problem was on my right side which is basically numb with excessive banding (tightening) in my right leg just above the knee. My left leg has always been more mobile but also has numbness combined with pins and needles. Unfortunatley 13+ years later the same problems exist and the only help is pain meds and channel blockers to try to decrease the banding which make walking so difficult and fatigueing. So far the 2 drugs that have provided me with the most relief is Marijuana and Lyrica. In conclusion after the first year I have had almost no change whatsoever in my condition. As like most TM'rs I have just learned to adapt as best I can! Rob in New Jersey From: Carol E [mailto:snow121...@hotmail.com] Sent: Monday, November 01, 2010 10:11 PM To: tmic-list@eskimo.com Subject: [TMIC] Lesions I have a question for those of you who were originally diagnosed with TM and having lesions from T7-T10 on one side of your spine. 1. Did you lose feeling just on one side from your waist down? 2. After a couple years or more, did you start having trouble with your opposite leg? (Tingling and tightness) I would appreciate hearing back from you. Carol from Addison, IL
[TMIC] Lesions
I have a question for those of you who were originally diagnosed with TM and having lesions from T7-T10 on one side of your spine. 1. Did you lose feeling just on one side from your waist down? 2. After a couple years or more, did you start having trouble with your opposite leg? (Tingling and tightness) I would appreciate hearing back from you. Carol from Addison, IL
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.
Re: [TMIC] lesions, re-occurance of TM .... and such
After I tried Lyrica, I was put on Cymbalta. That did work! I was on it for a year plus and it really helped my leg pain. I hope I can stay off it now because I am trying to be off drugs as much as I can stand.:) I do take Neurontin. It helps. When my rib banding gets bad I take extra Baclofen and increase my Neurontin a little. It's so hard to find that right combination! Sharon The bluebird in the cedar tree spoke to me... Your heart's desire dwells here--this is where you belong --- On Mon, 12/1/08, [EMAIL PROTECTED] [EMAIL PROTECTED] wrote: From: [EMAIL PROTECTED] [EMAIL PROTECTED] Subject: Re: [TMIC] lesions, re-occurance of TM and such To: [EMAIL PROTECTED], [EMAIL PROTECTED], tmic-list@eskimo.com Cc: Sharon M [EMAIL PROTECTED] Date: Monday, December 1, 2008, 7:49 PM I also tried Lyrica and all it did was make me loopy. Leg stinging was still the same and banding pain on waist did nto change Any other suggestions? (also tried Neuroten) it did not work either -- Original message from Sharon M [EMAIL PROTECTED]: -- Thanks for the info. Unfortunately Lyrica didn't work for me. I had a weird opposite reaction to it and it mad everything way worse. I'm so glad to hear it is working for you! Sharon The bluebird in the cedar tree spoke to me... Your heart's desire dwells here--this is where you belong --- On Sun, 11/30/08, George Kittner [EMAIL PROTECTED] wrote: From: George Kittner [EMAIL PROTECTED] Subject: Re: [TMIC] lesions, re-occurance of TM and such To: [EMAIL PROTECTED] Date: Sunday, November 30, 2008, 9:44 PM I am on Lyrica 100mg 3x day for my TM. It seems to help a lot. I originally started out at 50 mg 3x day and then 75 mg 3x day and have been on the current dosage of 100mg. I was diagnosed in February 2005. I have some pain in my mid back by late afternoon after working all day. It hit at T7 for me. When walking I lean toward my right side which is the side that it hit me on. I recently went for a balance test and will be going for an evaluation which I am told they will be able to work with me to assist with helping with my walking. Ask your doctor about Lyrica for TM. Let me know what your doctor says and if he will prescribe it for you. Valerie in Illinois --- On Fri, 11/28/08, Sharon M [EMAIL PROTECTED] wrote: From: Sharon M [EMAIL PROTECTED] Subject: Re: [TMIC] lesions, re-occurance of TM and such To: Pieter and Heather [EMAIL PROTECTED], tmic-list@eskimo.com Date: Friday, November 28, 2008, 9:21 AM Thanks Heather. The pain in my back was so severe last night that I decided I would see a doctor and insist that they get to the bottom of it. I want to find out for sure what is causing this pain. It is so easy to blame everything on MS. I'm not a wimp when it comes to pain. I have had chronic pain most of my life, but this is different. I don't think it would help to help to see neuro again. He assumes the pain is nerve pain, is connected to TM level in my spine and says the Neurontin should help. Hello! Neurontin does not help. How is your sister doing now? I run a large MS support group on Yahoo and it's not unusual to have other family members with MS or some of the rare neuro diseases. Hugs))) Sharon The bluebird in the cedar tree spoke to me... Your heart's desire dwells here--this is where you belong --- On Thu, 11/27/08, Pieter and Heather [EMAIL PROTECTED] wrote: From: Pieter and Heather [EMAIL PROTECTED] Subject: Re: [TMIC] lesions, re-occurance of TM and such To: [EMAIL PROTECTED], tmic-list@eskimo.com Date: Thursday, November 27, 2008, 10:42 PM Sharon, Are you going to be seeing your neuro again soon? I would be asking him about it again. Could it be another attack of the MS? I know my sister has MS and hers was a severe attack back in the late 80's. At that time they weren't sure it was MS.She then had a second severe attack in 1991 (when she was finally diagnosed). She figures she must have had MS even in the mid to late 70's and into the 80's but was never diagnosed. So I'm sure that MS can bring attacks more than once. Have you also seen your family physician to rule out any other problems? I know that even with TM or MS that we need to remember there are other medical problems other than these two that can cause problems. Keep us posted Heather in Calgary - Original Message - From: Sharon M To: tmic-list@eskimo.com Sent: Thursday, November 27, 2008 5:39 PM Subject: [TMIC] lesions, re-occurance of TM and such Hi again everyone! I was hit with TM suddenly in 9/97 and then was dxed with MS in 8/98. They have never found lesions in my spine but I do have lesions in my brain. My original neuro says he still thinks I have a hidden lesion on my spine. In late August 08 I was hit again with the severe numbness. This time on the right side instead of the original left side
Re: [TMIC] lesions, re-occurance of TM .... and such
Thanks for the info. Unfortunately Lyrica didn't work for me. I had a weird opposite reaction to it and it mad everything way worse. I'm so glad to hear it is working for you! Sharon The bluebird in the cedar tree spoke to me... Your heart's desire dwells here--this is where you belong --- On Sun, 11/30/08, George Kittner [EMAIL PROTECTED] wrote: From: George Kittner [EMAIL PROTECTED] Subject: Re: [TMIC] lesions, re-occurance of TM and such To: [EMAIL PROTECTED] Date: Sunday, November 30, 2008, 9:44 PM I am on Lyrica 100mg 3x day for my TM. It seems to help a lot. I originally started out at 50 mg 3x day and then 75 mg 3x day and have been on the current dosage of 100mg. I was diagnosed in February 2005. I have some pain in my mid back by late afternoon after working all day. It hit at T7 for me. When walking I lean toward my right side which is the side that it hit me on. I recently went for a balance test and will be going for an evaluation which I am told they will be able to work with me to assist with helping with my walking. Ask your doctor about Lyrica for TM. Let me know what your doctor says and if he will prescribe it for you. Valerie in Illinois --- On Fri, 11/28/08, Sharon M [EMAIL PROTECTED] wrote: From: Sharon M [EMAIL PROTECTED] Subject: Re: [TMIC] lesions, re-occurance of TM and such To: Pieter and Heather [EMAIL PROTECTED], tmic-list@eskimo.com Date: Friday, November 28, 2008, 9:21 AM Thanks Heather. The pain in my back was so severe last night that I decided I would see a doctor and insist that they get to the bottom of it. I want to find out for sure what is causing this pain. It is so easy to blame everything on MS. I'm not a wimp when it comes to pain. I have had chronic pain most of my life, but this is different. I don't think it would help to help to see neuro again. He assumes the pain is nerve pain, is connected to TM level in my spine and says the Neurontin should help. Hello! Neurontin does not help. How is your sister doing now? I run a large MS support group on Yahoo and it's not unusual to have other family members with MS or some of the rare neuro diseases. Hugs))) Sharon The bluebird in the cedar tree spoke to me... Your heart's desire dwells here--this is where you belong --- On Thu, 11/27/08, Pieter and Heather [EMAIL PROTECTED] wrote: From: Pieter and Heather [EMAIL PROTECTED] Subject: Re: [TMIC] lesions, re-occurance of TM and such To: [EMAIL PROTECTED], tmic-list@eskimo.com Date: Thursday, November 27, 2008, 10:42 PM Sharon, Are you going to be seeing your neuro again soon? I would be asking him about it again. Could it be another attack of the MS? I know my sister has MS and hers was a severe attack back in the late 80's. At that time they weren't sure it was MS.She then had a second severe attack in 1991 (when she was finally diagnosed). She figures she must have had MS even in the mid to late 70's and into the 80's but was never diagnosed. So I'm sure that MS can bring attacks more than once. Have you also seen your family physician to rule out any other problems? I know that even with TM or MS that we need to remember there are other medical problems other than these two that can cause problems. Keep us posted Heather in Calgary - Original Message - From: Sharon M To: tmic-list@eskimo.com Sent: Thursday, November 27, 2008 5:39 PM Subject: [TMIC] lesions, re-occurance of TM and such Hi again everyone! I was hit with TM suddenly in 9/97 and then was dxed with MS in 8/98. They have never found lesions in my spine but I do have lesions in my brain. My original neuro says he still thinks I have a hidden lesion on my spine. In late August 08 I was hit again with the severe numbness. This time on the right side instead of the original left side. The numbness has not gotten better this time. Then about 3 weeks ago I had a sudden, sharp severe pain in my back at that same level. I saw my new neuro last week and he said it was all connected. I had already figured it was connected. lol I am having much worse back pain lately, too. Really bad and nothing helps it. It's pain, burning and weakness That said, I am really doing pretty good. MS has kicked my butt at times and I have never been symptom-free since the TM attack Labor Day, 1997. I've just gotten worse over time. I am one of the lucky TMers, though, so I really hate to complain. I know it could be so much worse. I just wonder what you experts have to say about this latest occurance for me. hugs to you all Sharon Marsden --- On Tue, 11/25/08, [EMAIL PROTECTED] [EMAIL PROTECTED] wrote: From: [EMAIL PROTECTED] [EMAIL PROTECTED] Subject: tmic-digest Digest V2008 #457 To: [EMAIL PROTECTED] Date: Tuesday, November 25, 2008, 3:32 PM tmic-digest Digest Volume 2008 : Issue 457 Today's Topics: Re: [TMIC] Re: tmic-digest
Re: [TMIC] lesions, re-occurance of TM .... and such
I also tried Lyrica and all it did was make me loopy. Leg stinging was still the same and banding pain on waist did nto change Any other suggestions? (also tried Neuroten) it did not work either -- Original message from Sharon M [EMAIL PROTECTED]: -- Thanks for the info. Unfortunately Lyrica didn't work for me. I had a weird opposite reaction to it and it mad everything way worse. I'm so glad to hear it is working for you!SharonThe bluebird in the cedar tree spoke to me... "Your heart's desire dwells here--this is where you belong"--- On Sun, 11/30/08, George Kittner [EMAIL PROTECTED] wrote: From: George Kittner [EMAIL PROTECTED]Subject: Re: [TMIC] lesions, re-occurance of TM and suchTo: [EMAIL PROTECTED]Date: Sunday, November 30, 2008, 9:44 PM I am on Lyrica 100mg 3x day for my TM. It seems to help a lot. I originally started out at 50 mg 3x day and then 75 mg 3x day and have been on the current dosage of 100mg. I was diagnosed in February 2005. I have some pain in my mid back by late afternoon after working all day. It hit at T7 for me. When walking I lean toward my right side which is the side that it hit me on. I recently went for a balance test and will be going for an evaluation which I am told they will be able to work with me to assist with helping with my walking. Ask your doctor about Lyrica for TM. Let me know what your doctor says and if he will prescribe it for you. Valerie in Illinois --- On Fri, 11/28/08, Sharon M [EMAIL PROTECTED] wrote: From: Sharon M [EMAIL PROTECTED]Subject: Re: [TMIC] lesions, re-occurance of TM and suchTo: "Pieter and Heather" [EMAIL PROTECTED], tmic-list@eskimo.comDate: Friday, November 28, 2008, 9:21 AM Thanks Heather. The pain in my back was so severe last night that I decided I would see a doctor and insist that they get to the bottom of it. I want to find out for sure what is causing this pain. It is so easy to blame everything on MS.I'm not a wimp when it comes to pain. I have had chronic pain most of my life, but this is different. I don't think it would help to help to see neuro again. He assumes the pain is nerve pain, is connected to TM level in my spine and says the Neurontin should help. Hello! Neurontin does not help.How is your sister doing now? I run a large MS support group on Yahoo and it's not unusual to have other family members with MS or some of the rare neuro diseases.Hugs)))SharonThe bluebird in the cedar tree spoke to me... "Your heart's desire dwells here--this is where you belong"--- On Thu, 11/27/08, Pieter and Heather [EMAIL PROTECTED] wrote: From: Pieter and Heather [EMAIL PROTECTED]Subject: Re: [TMIC] lesions, re-occurance of TM and suchTo: [EMAIL PROTECTED], tmic-list@eskimo.comDate: Thursday, November 27, 2008, 10:42 PM Sharon, Are you going to be seeing your neuro again soon? I would be asking him about it again. Could it be another attack of the MS? I know my sister has MS and hers was a severe attack back inthe late 80's. At that time they weren't sure it was MS.Shethen had a second severe attack in 1991 (when she was finally diagnosed).She figures she must have had MS even in the mid to late 70's and into the 80's but was never diagnosed. So I'm sure that MS can bring attacks more than once. Have you also seen your family physician to rule out any other problems? I know that even with TM or MS that we need to remember there are other medical problems other than these two that can cause problems. Keep us posted Heather in Calgary - Original Message - From: Sharon M To: tmic-list@eskimo.com Sent: Thursday, November 27, 2008 5:39 PM Subject: [TMIC] lesions, re-occurance of TM and such Hi again everyone! I was hit with TM suddenly in 9/97 and then was dxed with MS in 8/98. They have never found lesions in my spine but I do have lesions in my brain. My original neuro says he still thinks I have a hidden lesion on my spine. In late August 08 I was hit again with the severe numbness. This time on the right side instead of the original left side. The numbness has not gotten better this time. Then about 3 weeks ago I had a sudden, sharp severe pain in my back at that same level. I saw my new neuro last week and he said it was "all connected". I had already figured it was "connected". lolI am having much worse back pain lately, too. Really bad and nothing helps it. It's pain, burning and weaknessThat said, I am really doing pretty good. MS has kicked my butt at times and I have never been symptom-free since the TM attack Labor Day, 1997. I've just gotten worse over time.I am one of the lucky TMers, though, so I really hate to complain. I know it could be so much worse. I just wonder what you experts have to say about this latest occurance for me.hugs to you allSharon Marsden--- On Tue, 11/25/08, [EMAIL PROTECTED] [EMAIL PROTECTED] wrote: From: [EMAIL PROTECTED] [EMAIL PROTECTED]Subject: tmic-digest D
Re: [TMIC] lesions, re-occurance of TM .... and such
Thanks Heather. The pain in my back was so severe last night that I decided I
would see a doctor and insist that they get to the bottom of it. I want to
find out for sure what is causing this pain. It is so easy to blame everything
on MS.
I'm not a wimp when it comes to pain. I have had chronic pain most of my life,
but this is different.
I don't think it would help to help to see neuro again. He assumes the pain is
nerve pain, is connected to TM level in my spine and says the Neurontin should
help. Hello! Neurontin does not help.
How is your sister doing now? I run a large MS support group on Yahoo and it's
not unusual to have other family members with MS or some of the rare neuro
diseases.
Hugs)))
Sharon
The bluebird in the cedar tree spoke to me... Your heart's desire dwells
here--this is where you belong
--- On Thu, 11/27/08, Pieter and Heather [EMAIL PROTECTED] wrote:
From: Pieter and Heather [EMAIL PROTECTED]
Subject: Re: [TMIC] lesions, re-occurance of TM and such
To: [EMAIL PROTECTED], tmic-list@eskimo.com
Date: Thursday, November 27, 2008, 10:42 PM
AOL Email
Sharon,
Are you going to be seeing your neuro again
soon? I would be asking him about it again. Could it be another
attack of the MS? I know my sister has MS and hers was a severe attack
back in the late 80's. At that time they weren't sure it was
MS.She then had a second severe attack in 1991 (when she was finally
diagnosed). She figures she must have had MS even in the mid to late 70's
and into the 80's but was never diagnosed. So I'm sure that MS can bring
attacks more than once.
Have you also seen your family physician to rule
out any other problems? I know that even with TM or MS that we need to
remember there are other medical problems other than these two that can cause
problems.
Keep us posted
Heather in Calgary
- Original Message -
From:
Sharon
M
To: tmic-list@eskimo.com
Sent: Thursday, November 27, 2008 5:39
PM
Subject: [TMIC] lesions, re-occurance of
TM and such
Hi again
everyone!
I was hit with TM
suddenly in 9/97 and then was dxed with MS in 8/98. They have
never found lesions in my spine but I do have lesions in my brain.
My original neuro says he still thinks I have a hidden lesion on my
spine.
In late August 08 I
was hit again with the severe numbness. This time on the right
side instead of the original left side. The numbness has not
gotten better this time. Then about 3 weeks ago I had a
sudden, sharp severe pain in my back at that same level. I saw my
new neuro last week and he said it was all connected. I had
already figured it was connected. lol
I am having much
worse back pain lately, too. Really bad and nothing helps
it. It's pain, burning and weakness
That said, I am
really doing pretty good. MS has kicked my butt at times and I
have never been symptom-free since the TM attack Labor Day, 1997.
I've just gotten worse over time.
I am one of the lucky
TMers, though, so I really hate to complain. I know it could
be so much worse. I just wonder what you experts have to say about
this latest occurance for me.
hugs to you
all
Sharon
Marsden
--- On Tue, 11/25/08,
[EMAIL PROTECTED]
[EMAIL PROTECTED] wrote:
From:
[EMAIL PROTECTED]
[EMAIL PROTECTED]
Subject: tmic-digest Digest
V2008 #457
To: [EMAIL PROTECTED]
Date: Tuesday, November
25, 2008, 3:32 PM
tmic-digest Digest Volume 2008 : Issue 457
Today's Topics:
Re: [TMIC] Re: tmic-digest Digest V2 [ jrushton
[EMAIL PROTECTED] ]
#yiv625162981 #yiv1833211580 v\:* {
}
#yiv625162981 #yiv1833211580 v\:* {
}
Jenna, it must be 'where' the lesion is and how much damage
it has or they have done. Also, I think it also my have to
do with how long it went on from the onset before anything was
done to 'stop' it?? Your earlier comment, who knows for
sure is right on! Jeanne
---Original
Message---
From: Jenna
Date:
11/24/2008 8:13:40 PM
To: Pieter and Heather; [EMAIL PROTECTED]; [EMAIL PROTECTED];
[EMAIL PROTECTED]
Subject: Re:
[TMIC] Re: tmic-digest Digest V2008 #431
It
is complicated. But I have 3 lesions on my spine. And
damage to my optic nerve. So since the damage to the
optic nerve
[TMIC] lesions, re-occurance of TM .... and such
Hi again everyone!
I was hit with TM suddenly in 9/97 and then was dxed with MS in 8/98. They
have never found lesions in my spine but I do have lesions in my brain. My
original neuro says he still thinks I have a hidden lesion on my spine.
In late August 08 I was hit again with the severe numbness. This time on the
right side instead of the original left side. The numbness has not gotten
better this time. Then about 3 weeks ago I had a sudden, sharp severe pain in
my back at that same level. I saw my new neuro last week and he said it was
all connected. I had already figured it was connected. lol
I am having much worse back pain lately, too. Really bad and nothing helps
it. It's pain, burning and weakness
That said, I am really doing pretty good. MS has kicked my butt at times and I
have never been symptom-free since the TM attack Labor Day, 1997. I've just
gotten worse over time.
I am one of the lucky TMers, though, so I really hate to complain. I know it
could be so much worse. I just wonder what you experts have to say about this
latest occurance for me.
hugs to you all
Sharon Marsden
--- On Tue, 11/25/08, [EMAIL PROTECTED] [EMAIL PROTECTED] wrote:
From: [EMAIL PROTECTED] [EMAIL PROTECTED]
Subject: tmic-digest Digest V2008 #457
To: [EMAIL PROTECTED]
Date: Tuesday, November 25, 2008, 3:32 PM
tmic-digest Digest Volume 2008 : Issue 457
Today's Topics:
Re: [TMIC] Re: tmic-digest Digest V2 [ jrushton
[EMAIL PROTECTED] ]
AOL Email
#yiv1833211580 v\:* {
}
#yiv1833211580 v\:* {
}
Jenna, it must be 'where' the lesion is and how much damage it has or they have
done. Also, I think it also my have to do with how long it went on from the
onset before anything was done to 'stop' it?? Your earlier comment, who knows
for sure is right on! Jeanne
---Original Message---
From: Jenna
Date: 11/24/2008 8:13:40 PM
To: Pieter and Heather; [EMAIL PROTECTED]; [EMAIL PROTECTED]; [EMAIL PROTECTED]
Subject: Re: [TMIC] Re: tmic-digest Digest V2008 #431
It is complicated. But I have 3 lesions on my spine. And damage to my optic
nerve. So since the damage to the optic nerve was first, before the first
problems showed up in the spine, it is call Divic's version of MS. I hope this
makes some kind of since. But the weird thing to me is so many of you my
friends have no lesions, just inflammation and can not walk and here I am with
3 lesions and can still walk???
Jenna
From: Pieter and Heather [EMAIL PROTECTED]
To: [EMAIL PROTECTED]; [EMAIL PROTECTED]; tmic-list@eskimo.com
Sent: Monday, November 24, 2008 2:20:58 PM
Subject: Re: [TMIC] Re: tmic-digest Digest V2008 #431
That is the way I understand it too Jude. My sister who is 3 yrs younger than
me has MS. It is the one that progresses slowly but everytime she has and MRI
she has more lesions on both spine and brain.
Heather in Calgary
- Original Message -
From: [EMAIL PROTECTED]
To: [EMAIL PROTECTED] ; tmic-list@eskimo.com
Sent: Monday, November 24, 2008 12:06 PM
Subject: Re: [TMIC] Re: tmic-digest Digest V2008 #431
Hello All,
It has been my understanding that with TM one must have lesions on the spine
but not on the brain. If one has lesions on the brain it is indicative of MS.
Am I misinformed regarding this information?
God Bless You,
Jude
In a message dated 11/24/2008 8:34:00 A.M. Eastern Standard Time, [EMAIL
PROTECTED] writes:
Frank,
They were never able to locate a lesion on my spine and from what I have read
on the message forums this is true for alot of people.
I had mutiple MRIs done both with and without contrast.
Lynne
--- On Sun, 11/23/08, [EMAIL PROTECTED] [EMAIL PROTECTED] wrote:
From: [EMAIL PROTECTED] [EMAIL PROTECTED]
Subject: Re: [TMIC] Re: tmic-digest Digest V2008 #431
To: jrushton [EMAIL PROTECTED], [EMAIL PROTECTED], TMIC
tmic-list@eskimo.com
Date: Sunday, November 23, 2008, 4:30 PM
i have a question, has anyone else been told that
they don't have lesions on their spine? my neuro
says mine is just swelling from c6-t3 and t9-t10., so
what does that mean?
What does swelling from c6-t3 and t9-t10 mean??
Did you have an MRI with and with out gadolium
(enhansement)?
F
One site has it all. Your email accounts, your social networks, and the things
you love. Try the new AOL.com today!
Re: [TMIC] lesions, re-occurance of TM .... and such
That's what my first neuro says too. Thanks.
Sharon
The bluebird in the cedar tree spoke to me... Your heart's desire dwells
here--this is where you belong
--- On Thu, 11/27/08, [EMAIL PROTECTED] [EMAIL PROTECTED] wrote:
From: [EMAIL PROTECTED] [EMAIL PROTECTED]
Subject: Re: [TMIC] lesions, re-occurance of TM and such
To: [EMAIL PROTECTED]
Date: Thursday, November 27, 2008, 5:42 PM
One of mine said that they r sometimes toob small to seeSent from my Verizon
Wireless BlackBerryFrom: Sharon M [EMAIL PROTECTED]
Date: Thu, 27 Nov 2008 16:39:25 -0800 (PST)
To: tmic-list@eskimo.com
Subject: [TMIC] lesions, re-occurance of TM and such
Hi again everyone!
I was hit with TM suddenly in 9/97 and then was dxed with MS in 8/98. They
have never found lesions in my spine but I do have lesions in my brain. My
original neuro says he still thinks I have a hidden lesion on my spine.
In late August 08 I was hit again with the severe numbness. This time on the
right side instead of the original left side. The numbness has not gotten
better this time. Then about 3 weeks ago I had a sudden, sharp severe pain in
my back at that same level. I saw my new neuro last week and he said it was
all connected. I had already figured it was connected. lol
I am having much worse back pain lately, too. Really bad and nothing helps
it. It's pain, burning and weakness
That said, I am really doing pretty good. MS has kicked my butt at times and I
have never been symptom-free since the TM attack Labor Day, 1997. I've just
gotten worse over time.
I am one of the lucky TMers, though, so I really hate to complain. I know it
could be so much worse. I just wonder what you experts have to say about this
latest occurance for me.
hugs to you all
Sharon Marsden
--- On Tue, 11/25/08, [EMAIL PROTECTED] [EMAIL PROTECTED] wrote:
From: [EMAIL PROTECTED] [EMAIL PROTECTED]
Subject: tmic-digest Digest V2008 #457
To: [EMAIL PROTECTED]
Date: Tuesday, November 25, 2008, 3:32 PM
tmic-digest Digest Volume 2008 : Issue 457
Today's Topics:
Re: [TMIC] Re: tmic-digest Digest V2 [ jrushton
[EMAIL PROTECTED] ]
AOL Email#yiv2048505932 #yiv1833211580 v\:* {}#yiv2048505932 #yiv1833211580
v\:* {} Jenna, it must be 'where' the lesion is and how much damage it has or
they have done. Also, I think it also my have to do with how long it went on
from the onset before anything was done to 'stop' it?? Your earlier comment,
who knows for sure is right on! Jeanne ---Original Message--- From:
JennaDate: 11/24/2008 8:13:40 PMTo: Pieter and Heather; [EMAIL PROTECTED];
[EMAIL PROTECTED]; [EMAIL PROTECTED]: Re: [TMIC] Re: tmic-digest Digest V2008
#431 It is complicated. But I have 3 lesions on my spine. And damage to my
optic nerve. So since the damage to the optic nerve was first, before the
first problems showed up in the spine, it is call Divic's version of MS. I
hope this makes some kind of since. But the weird thing to me is so many of
you my friends have no lesions, just inflammation and can not walk and here I
am with
3 lesions and can still walk???
Jenna
From: Pieter and Heather [EMAIL PROTECTED]
To: [EMAIL PROTECTED]; [EMAIL PROTECTED]; tmic-list@eskimo.com
Sent: Monday, November 24, 2008 2:20:58 PM
Subject: Re: [TMIC] Re: tmic-digest Digest V2008 #431
That is the way I understand it too Jude. My sister who is 3 yrs younger than
me has MS. It is the one that progresses slowly but everytime she has and MRI
she has more lesions on both spine and brain. Heather in Calgary -
Original Message - From: [EMAIL PROTECTED] To: [EMAIL PROTECTED] ;
tmic-list@eskimo.com Sent: Monday, November 24, 2008 12:06 PMSubject: Re:
[TMIC] Re: tmic-digest Digest V2008 #431
Hello All, It has been my understanding that with TM one must have lesions on
the spine but not on the brain. If one has lesions on the brain it is
indicative of MS. Am I misinformed regarding this information? God Bless
You,Jude In a message dated 11/24/2008 8:34:00 A.M. Eastern Standard Time,
[EMAIL PROTECTED] writes:Frank,
They were never able to locate a lesion on my spine and from what I have read
on the message forums this is true for alot of people.
I had mutiple MRIs done both with and without contrast.
Lynne
--- On Sun, 11/23/08, [EMAIL PROTECTED] [EMAIL PROTECTED] wrote:
From: [EMAIL PROTECTED] [EMAIL PROTECTED]
Subject: Re: [TMIC] Re: tmic-digest Digest V2008 #431
To: jrushton [EMAIL PROTECTED], [EMAIL PROTECTED], TMIC
tmic-list@eskimo.com
Date: Sunday, November 23, 2008, 4:30 PM
i have a question, has anyone else been told that
they don't have lesions on their spine? my neuro
says mine is just swelling from c6-t3 and t9-t10., so
what does that mean?
What does swelling from c6-t3 and t9-t10 mean??
Did you have an MRI with and with out gadolium
(enhansement)?
F
One site has it all. Your email accounts, your social
Re: [TMIC] lesions, re-occurance of TM .... and such
AOL EmailSharon, Are you going to be seeing your neuro again soon? I would be asking him about it again. Could it be another attack of the MS? I know my sister has MS and hers was a severe attack back in the late 80's. At that time they weren't sure it was MS.She then had a second severe attack in 1991 (when she was finally diagnosed). She figures she must have had MS even in the mid to late 70's and into the 80's but was never diagnosed. So I'm sure that MS can bring attacks more than once. Have you also seen your family physician to rule out any other problems? I know that even with TM or MS that we need to remember there are other medical problems other than these two that can cause problems. Keep us posted Heather in Calgary - Original Message - From: Sharon M To: tmic-list@eskimo.com Sent: Thursday, November 27, 2008 5:39 PM Subject: [TMIC] lesions, re-occurance of TM and such Hi again everyone! I was hit with TM suddenly in 9/97 and then was dxed with MS in 8/98. They have never found lesions in my spine but I do have lesions in my brain. My original neuro says he still thinks I have a hidden lesion on my spine. In late August 08 I was hit again with the severe numbness. This time on the right side instead of the original left side. The numbness has not gotten better this time. Then about 3 weeks ago I had a sudden, sharp severe pain in my back at that same level. I saw my new neuro last week and he said it was all connected. I had already figured it was connected. lol I am having much worse back pain lately, too. Really bad and nothing helps it. It's pain, burning and weakness That said, I am really doing pretty good. MS has kicked my butt at times and I have never been symptom-free since the TM attack Labor Day, 1997. I've just gotten worse over time. I am one of the lucky TMers, though, so I really hate to complain. I know it could be so much worse. I just wonder what you experts have to say about this latest occurance for me. hugs to you all Sharon Marsden --- On Tue, 11/25/08, [EMAIL PROTECTED] [EMAIL PROTECTED] wrote: From: [EMAIL PROTECTED] [EMAIL PROTECTED] Subject: tmic-digest Digest V2008 #457 To: [EMAIL PROTECTED] Date: Tuesday, November 25, 2008, 3:32 PM tmic-digest Digest Volume 2008 : Issue 457Today's Topics: Re: [TMIC] Re: tmic-digest Digest V2 [ jrushton[EMAIL PROTECTED] ]Jenna, it must be 'where' the lesion is and how much damage it has or they have done. Also, I think it also my have to do with how long it went on from the onset before anything was done to 'stop' it?? Your earlier comment, who knows for sure is right on! Jeanne ---Original Message--- From: Jenna Date: 11/24/2008 8:13:40 PM To: Pieter and Heather; [EMAIL PROTECTED]; [EMAIL PROTECTED]; tmic-list@eskimo.com Subject: Re: [TMIC] Re: tmic-digest Digest V2008 #431 It is complicated. But I have 3 lesions on my spine. And damage to my optic nerve. So since the damage to the optic nerve was first, before the first problems showed up in the spine, it is call Divic's version of MS. I hope this makes some kind of since. But the weird thing to me is so many of you my friends have no lesions, just inflammation and can not walk and here I am with 3 lesions and can still walk??? Jenna From: Pieter and Heather [EMAIL PROTECTED] To: [EMAIL PROTECTED]; [EMAIL PROTECTED]; tmic-list@eskimo.com Sent: Monday, November 24, 2008 2:20:58 PM Subject: Re: [TMIC] Re: tmic-digest Digest V2008 #431 That is the way I understand it too Jude. My sister who is 3 yrs younger than me has MS. It is the one that progresses slowly but everytime she has and MRI she has more lesions on both spine and brain. Heather in Calgary - Original Message - From: [EMAIL PROTECTED] To: [EMAIL PROTECTED] ; tmic-list@eskimo.com Sent: Monday, November 24, 2008 12:06 PM Subject: Re: [TMIC] Re: tmic-digest Digest V2008 #431 Hello All, It has been my understanding that with TM one must have lesions on the spine but not on the brain. If one has lesions on the brain it is indicative of MS. Am I misinformed regarding this information? God Bless You, Jude In a message dated 11/24/2008 8:34:00 A.M. Eastern Standard Time, [EMAIL PROTECTED] writes: Frank
Re: [TMIC] lesions in the brain
I know that when they suspect someone of Alhzeimer's they scan the brain to look for lesions. I know this because my mom has Alhzeimer's. Sue Zieke [EMAIL PROTECTED] 04/25/06 11:48 PM has anyone ever heard that as some people age they get lesions in their brains, that are not ms or really anything to worry about.. it is just a part of their aging? sue
Re: [TMIC] lesions in the brain
Well, from what I've learned so far, as we age, all of us, our brains shrink at least 2% per year, more for those afflicted with TM-MS,etc.. I thought that any changes- seen on C.T. or MRI probably represent some sort of disease such as mini strokes, atherosclerosis... where did you learn about the shrinking?? My brain was shrunk years ago by a psychiatrist, so maybe that's why it's expanding!! F
Re: [TMIC] lesions in the brain
Frank So if one's brain is not shrunk by a shrink it has less chances of shrinking with age?? Nima My brain was shrunk years ago by a psychiatrist, so maybe that's why it's expanding!! F
Re: [TMIC] lesions in the brain
I learned about the brain shrinking from a symposium on MS put on by Vanderbilt University's Neurology dept three or four years ago. Quite an eye opener, that one was. Bobberino From: [EMAIL PROTECTED] To: BobbyJim ; Sue Zieke ; transverse myelitis club Sent: Thursday, April 27, 2006 7:50 AM Subject: Re: [TMIC] lesions in the brain - Well, from what I've learned so far, as we age, all of us, our brains shrink at least 2% per year, more for those afflicted with TM-MS,etc..-I thought that any changes- seen on C.T. or MRI probably represent some sort of disease such as mini strokes, atherosclerosis...where did you learn about the shrinking??My brain was shrunk years ago by a psychiatrist, so maybe that's why it's expanding!!F
[TMIC] lesions in the brain
has anyone ever heard that as some people age they get lesions in their brains, that are not ms or really anything to worry about.. it is just a part of their aging? sue
