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Re: Connective Tissue Disorder

Re: Connective Tissue Disorder

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Posted by Lynn Marie on January 15, 2000 at 01:46:35:

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?

From Lynn,

I too have dealt with the on and off "symptoms", kidney disfunction (frequent infections), muscle and nerve problems in my left shoulder neck and arm, and now trouble with my left breast as well, blood tests and even Bells Palsy five times on the left side of my face. All of which point to Lupus. But...the doctors hesitate to make a "Diagnosis" for fear I will be labeled and denied insurance coverage. So they tell me...rest, no stress, eat properly, and exercise moderately. Much easier said than done. But I do now listen to them. As of today I have determined raising my daughters and working full time is what puts my lupus into action. So I am not working at all. I feel much better but then it is hard to keep the emotional up and up when you feel like you have nothing to do. Guilt can set in real fast. If you just remember some days you will have the energy and some days you just need to take a nap or two and not be depressed about it. Because tomorrow may be one of the good days. Of course I am taking an antidepressant to aid in the emotional ups and downs. But I have accepted that my body needs that serratonin management and if thats what it needs well....let it have it.

So just deal with life one day at a time and make each day count.

Lynn Mariw




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