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Old 06-27-2015, 12:05 AM
dolby dolby is offline
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Join Date: Mar 2010
Posts: 17
10 yr Member
dolby dolby is offline
Junior Member
 
Join Date: Mar 2010
Posts: 17
10 yr Member
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Heb1212, why are you trying to get a lip biopsy? Do you have Sjogren's or not? APLS is often linked to a thrombotic form of SLE, not Sjogren's. If you have very high APLS, then your rheumy should have done a full SLE panel which includes ANA, DS-DNA, SSA/SSB, etc. The last 2 are Sjogren's antibodies but they're used also to diagnose SLE, especially SSA/Ro, since more people with lupus are positive for it than Sjogren's.

That's to make sure that your APLS is not secondary. You need to rule that out since you have muscle aches and joint paints which are indicative of SLE as well as other rheumatic autoimmune diseases. You need to see a rheumy who's up to speed on autoimmune diseases and is up to date with her continuing education requirements, not someone who specializes in gout or osteoporosis.

Make sure your blood records show SLE antibodies (DS-DNA, Smith, Sm-RNP, RNP, Chromatin, SSA/SSB and ANA) and other antibodies for rheumatic autoimmunity like RA, Scleroderma, MCTD, etc. She may not have tested all but a few like CCP or RA factor given your joint pain symptoms.

With regard to neuropathy, that could arise with SLE, Sjogren's, MCTD and even RA, in other words, most rheumatic autoimmune diseases. However, neuropathy is usually not that severe with rheumatic autoimmunity. It's peripheral, i.e., your limbs, not systemic. That's why you really need a good doc who can screen you properly to see what else is lurking.

The most urgent thing for you is to retest that APLS. If it was a false positive and due to some viral activity like your rheumy says, then we don't have to worry about this. But you still need to chase down your joint/muscle and neuropathy issues. After retesting your APLS and making sure your rheumy checked antibodies for rheumatic diseases, I'd go see a neuro for your neuropathy if not solved. .

I don't recommend a lip biopsy; it's disfiguring and has little value. Some doctors do it for their intellectual curiosity. Sjogren's can be easily diagnosed based on symptoms and antibodies. When you don't have dry eyes or a dry throat, there is no point.

Quote:
Originally Posted by heb1212 View Post
I have body-wide neuropathy, absolutely everywhere, pretty bad joint pain and terrible muscle pain.
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