Re: for Bill Kennedy, "weird tone reflex"
Lori Gasik (lgasik(AT)kiwi.dep.anl.gov)
Fri, 25 Apr 1997 06:56:33 -0500
>In a message dated 97-04-24 21:06:37 EDT, tmic-list(AT)eskimo.com writes:
>
><< 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
>
Dear Beth, I like to here that you had those weird reflexes to and how
long was that going on for until you got voluntary movement. Like I said
it's only been almost 3 monthes when should I stat expecting some signs or
when did you start seeing them. Another weird thing is after I go to sleep
and wake up my legs always feel like crap they got this anoying burning
sensation and my feeling gets better as the day goes on. I really need
help to get me through this. I just want someone to tell me its gonna get
better because theres no way I could live my life like this. And I'd like
to here some more stories of later recoveries where they didn't have
voluntary movement for a good 4 monthes or longer. Thanks for the response
Beth you really give me hope for the future.