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Re: Connective Tissue Disorder

Re: Connective Tissue Disorder

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Posted by Patricia on March 12, 2000 at 01:36:47:

In Reply to: Connective Tissue Disorder posted by kristin on November 24, 1999 at 13:06:09:

I was diagnosed in 1975 with Mixed Connective Tissue Disease when I was 24. I'd been 'undiagnosedly' ill for about a year. I come from a very autoimmune family. And by the way I have enjoyed very normal good health for some timek and am doing fine; I'm sort of a text-book luck-out case: I've never had anything stronger than salycilates and that was in the 70's (I do not taking drugs; took nefedipine for two days and quit). I did have what they think may have been a bout of calcinosis a couple of years ago so took something for that briefly. Other than Raynaud's, I've been quite ordinarily well since the 70's. My biggest advice is to listen to your body: When it's tired, rest it. But get up again later and keep it moving. (I even took up soccer when it was difficult to get up in the morning). And, get off caffeine, I mean ALL caffeine (teas, colas, Barg's rootbeer, colas, etc) Honor your body, look for the psychologcial metaphors in what your body is saying to you through symptoms (ie. what is the internal civil war about). Give thanks, cultivate spirituality, appreciate the everyday presence of everything, and.....Keep on Trucking. Pat

: About three years ago I was diagnosed with Connective Tissue Disorder after a retinal surgeon found blood clots in the retina of both my eyes and sent me to a rheumatologist. After bombarding my body with steroids, and taking more blood tests than I care to remember, I was found to have an incredibly high ANA count, although they couldn't definatively state that I had lupus. In the course of transitioning me off the steroids I experience a grand mal seizure (on a ski slope, no less). I still continue to have numerous problems with the clots in my eyes and the problems go into phases of remission, so to speak. I've been on some chemo drugs for a while, but have been off all medication for about a year and half. One of the doctors that I've seen indicated that he felt there was a strong possibility that I would one day be diagnosed with lupus. Other than periodic blood tests, does anyone have any suggestions on what things (symptoms) I should be looking for that need to be reported to my doctors?

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