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They say it is not CTS, arthritis, or fibromyalgia? What now?

They say it is not CTS, arthritis, or fibromyalgia? What now?

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Posted by Diane Too on June 06, 2000 at 15:13:35:

Hello, my name is Diane and I just discovered this msg board. After reading some of the postings I can
see that I'm not alone in trying to find answers. Not to discourage anybody but I have been searching
for anwers off and on for 6 years. I am a computer systems analyst and I play the flute and I fear that
someday I won't be able to do either.

I started noticing occasional pain and weakness in my hands about ten years ago, especially when I
would pick up my baby. Even though it was bothersome I didn't worry about it to much and it eventually
went away.

Some time later I noticed that both of my hands bothered me sometimes. It got noticably worse about 6 years
ago, about the same time I went into a major depression. I went for a physical because of my mental
state and while there I discussed the pain with my internist. She thought it was probably CTS.

Over a period of several months this led me to
- an othopedist who blew me off because "the wrong fingers were tingling" (they all tingle)
- a neurologist - the EMG showed nothing but "it could still be CTS"
- neck xrays and MRI were fine
- a physical therapist who was afraid to do too much because "I had so many non-CTS symtoms"
- a rheumatologist who said it wasn't arthritis, Lyme disease or fibromyalgia
I have repeated the neurologist and rheumatologist visits (no new tests) every so often which eventually
led to a stalemate. I have also had thyroid tests and vitamin deficiency tests, all negative.

Meanwhile the discomfort has gotten worst. I experience multiple sensations and they change from day to day
and even minute to minute. I now have the following symptoms:
- tingling in all fingers, both hands and forearms
- sharp pains in fingers or hand, and "boring" pain in my wrists
- numbness which sometimes works its way up into my shoulders (sometimes nauseating)
- aches in the joints of my fingers
- weakness in my hands, trouble grasping or gripping things
- my arms feel to weak to hold up my hands

Most anything requiring the use of my hands can aggrevate them. I try to avoid lifting or pulling heavy
objects, putting weight on my hands, or putting them in an un-natural position. Holding a hymnal in
church can be deadly, and yet sometimes a piece of paper is too heavy. The worst experience has been
a few times that I could barely feed myself for the pain in lifting a spoon or fork.

This spring I decided to persue my search for a diagnosis again. This time I went to another neurologist.
He did a new EMG which showed nothing wrong and he has stated in no uncertain terms that I don't
have CTS. However, he did order an MRI on my brain. I am currently waiting on the results.

This neurologist also sent me to a hand surgeon. He did xrays which "couldn't be more normal" and was
mystified. However, the surgeon did encourage me to be persistent and said that he felt that all of the
testing should be continued on a periodic basis until an answer was found.

If anyone who reads this has advice or information that could be helpful I would love to see it. Even if you
point me to other messages on the msg board. I am determined to find answers somehow. I have
tried to accept the fact that I may deal with this the rest of my life, but I want to know what this is that
I'm dealing with and what I should/can do and should/can not do to keep it from getting worse.

Thank you for reading this. Those of you who are also suffering are in my prayers. -- Diane

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