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

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

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Posted by Lisa on June 07, 2000 at 14:58:50:

In Reply to: They say it is not CTS, arthritis, or fibromyalgia? What now? 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

Hi Jackie, I would love to talk with you about your case. I have CTS, TOS (thoracic outlet synd), Fibro. I have also been through the ringer of the medical profession, still am actually. I only check these mess boards about once a mo. So if you like, and anyone else reading this message to talk pls email me at God Bless all of you sufferers. Lisa

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