Louise,
Those spasms you complain of at night, or whenever, can be pretty well
controlled by Baclofen. I would not be sleeping at night without it. It
really relaxes my legs.
Let me know if you try it or have tried it.
Janice
From: Louise Croyden
Sent: Saturday, August 13, 2011 9:03 PM
To: Dalton Garis ; john snodgrass ; tmic-list@eskimo.com ; deer...@aol.com
Subject: Re: [TMIC] Fwd: MY STORY
Hi Dalton,
I'm really confused because, as far as I know (and my neurologist concurs), TM
is not a disease unto itself but an attack of inflammation that is caused by
something else -- which could be a disease such as MS, Lupus, West Nile
Virus... or they may not be able to find a cause and the attack is then
labelled ideopathic. Quite a large number (can't remember the %) of the
ideopathic group have had a viral or bacterial infection prior to the
inflammatory attack. In my case they could not determine a definitive cause
but they think it may have been triggered by a sinus infection I'd had a couple
of weeks before. Somehow something got through the brain/blood barrier and
attacked the spinal cord at T12/L1. Of course, the immune system doesn't help
as it identifies a problem which it tries to fix so it attacks the same area
making the situation worse.
My neuro agrees that TM is not a disease so we are not living with a disease
called Transverse Myelitis (Transverse simply means across the spinal cord and
Myelitis means inflammation) but with the aftermath of that inflammatory attack
on our spinal cords, i.e., neuropathic pain and everything that includes.
So, when you say you "caught" the Indian form of TM, that is completely
contrary to everything I've been told during the past six years. I don't write
in often because everyone talks about living with this disease called TM and I
believe that's because many doctors really don't understand the process
themselves and don't explain it well enough to their patients. Let's face it
when we have lived through this traumatic situation, and are now suffering on a
daily basis, it is difficult to sort it all out.
I've come up with an analogy of driving to work one day and having a car
accident that injured my spinal cord. I say that now I'm living with the
results of that day when I was struck down with the paralysis. That seems to
put it into perspective for my family and friends.
Luckily, I'm no longer paralyzed but I was unable to continue working and can't
travel or do a lot of the things I used to enjoy or hoped to enjoy in
retirement. I'm one of the "walking wounded". I have a lot of deficits and
various types of neuropathic pain, stiffness, etc. I think the worst thing for
me is the debilitating weakness that consumes the core of my body. There is no
pattern -- it comes suddenly and leaves when it wants to. Then I pick myself
up and carry on. I call it "riding the wave".
For some unknown reason, for the past week I've had horrible muscle spasms that
have attacked both my legs (mainly during the night) from my toes and including
my calves and hamstrings. I'm hoping it will pass soon. I have even been hit
with them during my exercises in the morning. I work out about 1 and 1/2 hours
a day to keep going and a spasm even hit my right calf when I was on the
recumbent bike and I had to stop. That has never happened before.
I've read all your e-mails over the months with interest and have felt very
sorry for what you are going through. It sounds like you have good support
from your family and friends and I hope you can keep "riding the wave" with
courage.
Regards.
Louise
----- Original Message -----
From: Dalton Garis
To: john snodgrass ; tmic-list@eskimo.com ; deer...@aol.com
Sent: Saturday, August 13, 2011 4:15 PM
Subject: Re: [TMIC] Fwd: MY STORY
My Neurologist says I happened to catch the Indian variety of TM—we have so
many Indians and other South Asians working here as expats. The Indian variety
is actually new and as yet not fully described. The Japanese form is what
afflicts most, unfortunately, since it most always paralyzes and comes on very
quickly.
I am very happy nonetheless. These lost says are OK for me now, since I am
in my 60's and have no physical goals or burdens to deal with, now that I can
no longer work as Associate Professor and lecturer.
Never mind; lots of stuff to write, study and think about. And I got a
mandolin to learn to play. My brother plays and we will make music together,
as we did when we were all kids. That's what you did in those days, we made
our own music. My mother sang, Dad played his mandolin, my sister played the
piano, and my brother was on the guitar.
So, what's the problem? I was just curious if anyone else had these
continuous and on-going spells.
Thanks, all,
Dalton
Dalton H. Garis, Ph.D
(no longer) Associate Professor,
Commodity Price Behavior
The Petroleum Institute
P.O. Box 2533, Umm al Nar
Abu Dhabi, United Arab Emirates
Office: +971-02-607-5070/5297
Mobile: +971-50-668-5760
New York: (718) 271-2738
From: john snodgrass <jcs...@yahoo.com>
Date: Sat, 13 Aug 2011 12:15:37 -0700 (PDT)
To: <tmic-list@eskimo.com>, <deer...@aol.com>
Subject: Re: [TMIC] Fwd: MY STORY
Resent-From: <tmic-list@eskimo.com>
Resent-Date: Sat, 13 Aug 2011 12:17:11 -0700
it is documented that TM can come on in a short time or over a period
of time. mine came over a period of time but nonetheless when the time came I
went to the hospital!but with mostly the same symptoms as others with the
banding in the side and the tingling and loss of coordination and
well,,,,,stuff.
it is a scary feeling when you are walking and it is as if the earth is
moving away from your feet!and when cold feels hot and hot feels cold.
--- On Sat, 8/13/11, deer...@aol.com <deer...@aol.com> wrote:
From: deer...@aol.com <deer...@aol.com>
Subject: [TMIC] Fwd: MY STORY
To: tmic-list@eskimo.com
Date: Saturday, August 13, 2011, 11:41 AM
--------------------------------------------------------------------
From: deer...@aol.com
To: tmic-list@eskimo.com
Sent: 8/11/2011 5:38:07 P.M. Eastern Daylight Time
Subj: Fwd: MY STORY
------------------------------------------------------------------
From: deer...@aol.com
To: sthrnbll...@yahoo.com
Sent: 8/7/2011 11:19:36 A.M. Eastern Daylight Time
Subj: MY STORY
HI ANNIE I READ YOUR STORY AND WAS THINKING I SHOULD TELL MINE.
I AM NOW 76 AND HAVE HAD TM FOR 10 YEARS. I AWOKE ONE MORNING AND GOT OUT OF
BED AND MY LEGS WOULD NOT HOLD ME. I JUST MADE IT TO THE PHONE TO CALL MY
HUSBAND AND SAID SOMETHING IS HAPPENING TO ME. HE WAS HOME BEFORE THE EMS .
THEY TOOK ME TO THE HOSPITAL BUT NO ONE NEW WHAT WAS WAS WRONG, I COULD NOT
MOVE AT ALL. I WAS SO SCARED AND SO WERE MY FAMILY.. THEY THEN SENT ME TO YALE
HOSPITAL. THEY TOOK ALL TEST AND THEN SAID IT WAS TM. WHO KNEW WHAT TM WAS. I
WENT TO GAYLORE FOR REHAB AND AFTER A MONTH I STARTED TO MOVE MY ARMS BUT WITH
PAIN. THATS HOW FAR I GOT. I AM NOW IN A WHEEL CHAIR . MY PAIN IS UNDER CONTROL
AS BEST IT CAN BE. I HOPE YOU WILL KEEP TRYING TO TAKE CARE. MY PRAYERS ARE
WITH YOU. I HAVE A WOUNDERFUL HUSBAND THAT TAKES CARE OF ME SO I AM BLESSED.
MARIE
