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Re: Connective Tissue Disorder

Re: Connective Tissue Disorder

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Posted by beatle on November 28, 1999 at 18:17:37:

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

: 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?

Anything I say should not be a substitute for advice from your doctor. There are many symptoms of Lupus and they often come and go. The big four symptoms are: exhaustion, pain (usually in the joints), sun sensitivity and a red "butterfly" rash over the nose and cheeks. Other things associated are depression, easy bruising, hair loss, fever, chest pain, swelling of the feet/legs/eyelids, cold hands and feet, dry eyes and mouth, confusion, and pre-menstrual worsening of symptoms. Not every patient gets all of these and some occur at different times in the same patient. Certainly if your vision gets worse, run to the eye doctor or rheumatologist.

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