scleroderma & Sjogrens

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edsdaughter
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Date Joined Mar 2012
Total Posts : 1
   Posted 3/31/2012 10:24 AM (GMT -6)   
 I have had limited Scleroderma for years. I have had some serious heart and lung problems.  Lately, I have been experiencing some severe joint pain in my shoulders for which I have been receiving physical therapy. Within the past year I have noticed that I keep getting numerous mouth ulcers, dental cavities, and I can't seem to speek without needing water and then after I drink the water I have issues with drooling.  Went into the Rheumalogist, he said my glands in my neck and face seemed swollen.  He suggested that I might have secondary Sjogrens.  He ran numerous blood tests. The ANA of coarse was positive centrome pattern 1:1280, compliement C3 was also positive as was Rhuematoid factor.  However, the Sjogrens antybody was negative. Can you have Sjogrens with a negative Sjogrens antibody? The doctor is on vacation and won't be back for a few weeks, but I am curious about this.

Lynnwood
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Date Joined May 2005
Total Posts : 5604
   Posted 4/1/2012 8:37 PM (GMT -6)   
I don't know for sure, but I think some Drs dx Sjogren's without blood work. However, the most important thing is that you are treated for the symptoms. Dry eyes and dry mouth can both cause permanent damage if not treated with lubricants! Usually the first treatments are OTC eye lubricants (nothing containing medicine or 'red-eye' stuff), and then use Biotene mouthwash, toothpaste, and other products to help with the dry mouth.
Lynnwood, Lupus & Sjogren's Moderator
DIAGNOSING-LUPUS & LUPUS-RESOURCES
"Life is far too important to be taken seriously" - Oscar Wilde

CoachForGrowth
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Date Joined Apr 2012
Total Posts : 3
   Posted 4/20/2012 10:58 PM (GMT -6)   
Edsdaughter, I have recently been told I have Sjogren's. My ANA is positive with centromere B. Because of some symptoms that were suggestive of limited scleroderma, I saw a scleroderma specialist. He and 2 other doctors in that group (Scleroderma Research center) answered the question for me about the Sjogren's antibody marker.

He said only about 20% or more people who have Sjogren's DO NOT have the antibody. (Sorry, those are general terms...too sick right now to research and remind myself of the names/numbers.) He even said in his experience he believes the numbers are even higher! I've since done a lot of reading about this and experts seem to agree that the blood work is certainly not always seen with Sjogren's.

I'm being referred to Vanderbilt for Dysautonomia and Small fiber neuropathy, both which are complications of Sjogren's. This surprised me - and I'd never heard of it. It's not widely understood and these doctors told me emphatically not to go to any doctor, but seek only help from a "Sjogren's Center" where they specialize in it.

I'll be referred to John's Hopkins. They have a new Sjogren's Center there. Having the blood is one criteria for dx but if it's not present, they look at other things.

SO...yes you can have a diagnosis without the Sjogren's antibody markers.

bebearygood
New Member


Date Joined Nov 2012
Total Posts : 3
   Posted 11/16/2012 4:00 PM (GMT -6)   
Hi, I was just diagnosed with scleroderma, and it is the worst kind.  It is in my lungs and I use oxygen at night.  However, I still have alot of hope.  I am researching out Doctor Franco, in San Diego, to speak with him about the antibotic treatment.  In a book I just finished reading - Scleroderma, The Proven Therapy That Can Save Your Life by Henry Scammell, states that their finding are that the antibotic treatment can also reverse Scleroderma.  Their office is closed on Friday, so I cant wait until Monday to call him.  I need to find out what kind of insurance they take for the treatment.  I am going for it.

bebearygood
New Member


Date Joined Nov 2012
Total Posts : 3
   Posted 11/16/2012 4:07 PM (GMT -6)   
I should add, of course, in depends on the patient. Everyone that has Scleroderma should read the book I mentioned, and give their own opinion about it. My thoughts is that the book offers you hope that there is a chance to reverse this condition. Hope this helps.
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