Hi Deb!
This is Janice from Missouri
I have had TM for 2 years and am still trying to be able to tell just
"before" over doing it, that I have over done it! With me, there is more
nerve pain and I fall easily. Very irritating! It just takes time to
learn your new body.
I don't know if there are any actual stages to recovery. We are all too
different and the intensity of what hit us varies too much. I have been
told by doctors that the disease is usually divided into thirds - Bottom
third is no improvement - Middle third is moderate improvement and some
independence - Top third is almost complete or complete recovery. I
have also been told that 3-5 people out of a million will contract this
disease - pretty rare. Most recovery takes place the first 2 years with
some after that. Must be something "special" about us. This sure
is a great group to "talk" to and so open and helpful. I know that I want
to be a part of this group - I have already been helped and feel I can ask
anything.
When I was first hospitalized with this, I assumed that it would be short
term and that as soon as I recovered from all the other breakdowns my body
had, I would be fine. I had no idea and the doctors never told me that
this was my new life. I am still showing some improvements, but I can tell
I will never quite reach the "top" third. You guys will be hearing from
me for a long time!
----- Original Message -----
From: "Deb Monteleone" <[email protected]>
To: <[email protected]>
Sent: Sunday, March 08, 2009 7:33 PM
Subject: [TMIC] My TM experience
Hi, my name is Deb.
I am glad some of you are giving the history of your experience with TM.
I am fairly new to it and I am still trying to deal with it and figure
things out. I have been part of this group since about August 2008 but
have not participated much. I am still hopeful of making a good recovery
and I sensed that this group is mostly, if not all, comprised of people
who have not recovered fully. When first joining I had asked the
question, does anyone know what the stages of recovery are and no one
answered.
My episode started June 2008, five days after my 52nd birthday. I woke up
one morning and noticed my feet were numb. I tried wiggling my toes but
nothing happened, I jumped out of bed thinking my feet would be blue from
lack of circulation. To my surprise, they looked fine. I walked around
and nothing changed, so I went to work with numb feet. In the next five
days, the numbness progressed up to my waist. I could still walk but I
started using a cane.
Within the 1st two weeks (can't remember exact times anymore) I woke up in
the middle of the night with an excruciating pain on my side. I couldn't
even move. My husband (my hero) called 911; I thought maybe my appendix
burst. The emergency room ignored the fact that I was numb and had to
walk with a cane, they were just focusing on the pain in my side. They
found nothing, next day I went to my primary care doctor; they took one
look at me and called a Neurologist, who saw me that day. The Neurologist
took one look at me and told me I had TM and I would be having a lifestyle
change (boy, I had no idea what he was really referring to). He said the
pain in the side was a referred pain from the TM (it happened again the
next weekend, off to the hospital for morphine). I went on IV steroids
for three days, then oral ones for seven days. Three days after the end
of the steroids I couldn't walk (left leg went limp), bladder shut down as
did bowels. Went to hospital for 5 days of IV steroids, then off to Rehab
for 2 ½ weeks. Then home to deal with my new "lifestyle".
It took me about a month to accept that my life was really changing and
this was not something that would be better in a month or two. I had the
support and help of my 75 year old mother (she moved in with us for two
months) and my husband. At this time I was using a walker and trying to
learn how to walk again and get balance back.
I feel I am still making progress, although very slowly. I now walk with
a cane, drive with hand controls and work full time which is tiring and
hard to concentrate with the baclofen, neurontin, cymbalta and klonopen.
I still have questions and am trying to learn how my body now reacts to
things. I was always active and still do not really understand how you
judge what 'overdoing' it is. One of the emails explained that paying for
it means that the burning gets really bad. I do have bad days with the
burning, stinging and spasticity but I didn't think I overdid anything;
this is where I fall short of knowing my new limits. Also, is it possible
to build up stamina or will that never happen?
Any input on these questions would be appreciated.
Deb
Long Island, NY
