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 was....I 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 life........no matter
how small, improvement is improvement and gives hope for more to come!!
My 2ยข 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.
