<< And lately I have been getting weird tone
reflexs that I can partially controll. Like when ever i make a movement
after being in a position for about a minute my legs will tone and I can
controll the way I want them to move. I was wondering if there were any
people with similar things that happened to them. And if so I'd like to
here from them . I don't know If its good or bad or just normal. And I'd
also would like to here from other people who had a good recovery over a
period of maybe 6 months or so. But befor that there wasn't much going on
and they felt like it might never come back. I know it might seem early
the doctors say but if I will recover when should I expect it and are there
any signs you could see befor it happens to give me some hope. It just >>
Dear Bill,
I awakened in the middle of the nigh,t and I was unable to fall asleep after
reading your letter to the TM group, it reminded me of my first experiences
with TM. You are not alone! I have had TM since Nov. of 1995, and things
will get better, they did for me and the symtoms you are having remind me
alot of the first 6 months of my TM. The "weird tone reflexs" you speak of
in your letter occured in my case as well. Many times these "tone reflexs"
would come at any given time, and would be followed by some form of
controled movement. These weird tone reflexs would not occure in synergy
with other groups of muscles. for instance my thigh muscles would flex
(spasm) yet the other muscle groups associated with normal synergy would not
work. It would almost appear to be an alien under the skin, rigorously trying
to get out. This was very frightening and even painful. I began to improve
in this area in about 6-8 months.
I now walk without a cane (as of 3 weeks ago) and I am in Aquadic Physical
Therapy. I am using a TENS unit and I have E-STEM therapy in conjunction
with the medications prescribed by my doctor. Most of the time the
medications for TM are only those used to control the symtoms. The E-STEM
(and a pushy doctor) have been one of the best recovery tools for me. I am
retraining and regaining in different areas each month and I believe I will
have good if not full recovery.(got to keep a good frame of mind) Please
keep in mind that every one is different and each of us will progress at a
different rate, but as we do, we will give the solutions to the next group
and so on. Before each improvement I have experienced, I have had changes,
such as the weird tone reflexs you are experiencing. Many times the pain
would be so great that I did not think I would live through the night. After
these times of change and pain I had the greatest improvement. One very
helpful tool I have is a prescription compound cream, KETO/ CYCLO/ DEXA/
GUAIF (I can't take oral muscle relaxants). This cream is a muscle relaxant,
anti-inflamitory, mild pain reliever used just for the "weird tone reflexs"
that were unmanagable.
In closing, just recently I received a letter from a man who is not a member
of the TM group, but was browsing the net and read a letter I had written to
the group. In his response letter he shared his TM recovery story, it was a
great encouragement. He said his TM was much like mine and he had started in
a wheel chair. Yet with in 18 months he had gone from wheelchair to being
able to play light tennis matches. If I can figure out how to transfer the
"file" of his letter I will let you read it in its entirety. It is my hope
and prayer that the "weird tone reflexs" are much like mine and you will
start to see your leg muscles move in synergy, thus allowing you to walk. If
you need to talk at anytime please do not hesitate to write me, and I will
respond asap. (if there are typo's in this it is the norm for me when I am
writing at 3 am )
Kindest regards,
Beth