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:[email protected]]
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 <[email protected]>
To: tmic <[email protected]>
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.
