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 <[email protected]> wrote:
From: Janice Nichols <[email protected]>
Subject: Re: [TMIC] Lesions and Myelin Regeneration
To: "Robert Pall" <[email protected]>, "Jan Hargrove"
<[email protected]>, "lynne myers" <[email protected]>, "tmic"
<[email protected]>
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 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.
