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Anyone With These Symptoms?

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#1 claude



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Posted 04 February 2008 - 04:36 AM

I've had lupus since 1980. In the year 2000, my lupus was in complete remission when I got bitten by a Lyme tick. My doctor affirfmed that there was no Lyme disease in Southern Ca. and that my aches and pains were related to the lupus. (He now changed his tune) It took two years before I was diagnosed with Lyme... In 2003 my tongue started swelling. I was told it was acid reflux. The skin all over my body started thickening, including my face. I got a biopsy and was told I had cutaneous scleroderma. But they cannot decide why my tongue is swelling since apparently, scleroderma does not affect the tongue (but I read that scleredema does). What kind of test should I ask for? What doctor specializes in this disease? I am watching myself get worse every day and no one is doing anything about it. I live in Los Angeles. Any advice? Thank you.

#2 LisaBulman


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Posted 04 February 2008 - 05:40 AM

Here is a list of the sclero specialists in California. I would highly recommend seeing one of them if you can. You should really see a sclero specialist so they can give you a correct diagnosis and run the proper tests.

Good Luck!
Lisa Bulman
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#3 bookworm


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Posted 04 February 2008 - 11:15 AM

Another sclero expert that, for some reason, isn't on the list, is Dr. Victor Test in San Diego. I believe he's with the University there. If you like, I can get more information on this for you. I thought San Diego might be closer to your home.

Mary in Texas

#4 kelowna52


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Posted 05 February 2008 - 03:37 AM

Hello Claude, I used to live in S. Ca. and I went to a few differant doctor's in LA. I went to UCLA for alot of my tests and I saw a Scleroderma doctor. by the name of Dr. Clements, he is excellent, and very well know. He was on the show Mystery Diagnosis. He is a Rheumatologist. UCLA is one of the top research centers for Scleroderma research. I also saw Dr. Wallace in Beverly Hills he specializes in Lupus. These are both excellent Rheumatologists. Good luck to you.

Jackie S.

P.S. If you need any phone #'s for these doctor's you can send me a personal message.

#5 claude



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Posted 14 February 2008 - 12:51 PM

Doctor Wallace has been treating me for the last 20 years for lupus and he sent me to Clements who doesn't seem convince that I have scleroderma, in spite of all the symptoms, including tightness in the face, legs and arms. Thank you so much for taking the time to answer my post. Time will tell.