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#1 navydad

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Posted 31 March 2008 - 05:19 AM

I had a lip biopsy done on my lower lip and it showed fibrosis,, along with that my immune system shows low in IGG subclass2,, plus low IGM,, now I;m breaking out in rashes on my legs and stomach,, legs are so tingly,, can't feel my toes of feet for that matter,, chronic thrush and ear infections,, GI problems,, its a nightmare that won't end,, seen every doctor,, bloodwork comes back negative,, I am at my wits end,, any of this sound like sclero?,,, pathology report asked if tehre was any sclero in family,, none that I am aware of,, I have been fighting this for over a year and its getting worse,,, 3 sinus surgery last year,, last one turned out to be allergic fungal sinusitis,,

#2 Peggy

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Posted 31 March 2008 - 06:33 AM

My sclero started with "tingling of my feet and hands" where it felt like they were going asleep. Then they went numb. It took a year of testing and different appointments with different doctors with different specialties to finally have the diagnosis of sclero. So if there is a site where you have had some swelling where they can take a biopsy from go and see a rehum doctor whose specialty is sclero and have that done, along with the accompanying blood work. Then you will know for sure if that is what is causing it. I now have just gotten an additional diagnosis of Polymyositis too.

Good luck.

Peggy

#3 Sheryl

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Posted 31 March 2008 - 06:47 AM

Navydad, I feel so sorry that your diagnosis is taking so long. Sometimes it takes a couple of years. Sometimes it is very clear cut. My blood work doesn't show that I am negative or positive. Neither does the Sclero -70 test. Some of us have Scleroderma even though it doesn't always show up in the blood unless an extream flare is going on. Then the doctors treat what shows up in the blood. Whether it is anemia or high blood pressure etc. Keep reading these posts and someone might be able to help you figure out what is going on with you. Read some of the Lupus and other information on this sight. I believe you have come to the right place to learn more on what is going on. Welcome, Sheryl
Strength and Warmth,
Sheryl

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International Scleroderma Network (ISN)

#4 navydad

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Posted 31 March 2008 - 07:12 AM

Thank you Peggy,, on Wed I have a appt with a Dr. Thomas Metsger,, he's listed as one of the experts on the sclero site here,, apparently I was fortunate that he had a cancellation and was able to get me in,, My rheumatologist jumped on the opportunity to get me in to see him,,