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Old 09-14-2016, 09:28 PM
MAT52 MAT52 is offline
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Join Date: Feb 2015
Location: Scotland, UK
Posts: 529
8 yr Member
MAT52 MAT52 is offline
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Join Date: Feb 2015
Location: Scotland, UK
Posts: 529
8 yr Member
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Quote:
Originally Posted by en bloc View Post
Oh, I agree! At least he had to knowledge to order the lip biopsy and that gave you the Dx.

Doctors can chose to follow new research or not. Many don't have time and focus their studies on what they do know (like other more common diseases). Just don't let the lack of knowledge (from the doctor) send you in a direction that is incorrect. You can take your research (print your sites/articles) and show them to your doctor. Some doctors don't like patients to do this, but I'm of the mind that I'd rather have a doctor that is willing to learn what they don't know vs one that works off outdated or lack of information.

I'd love to read any article you've found on SVID from Sjogren's being treated with Rituximab. I'm always interested in treatment info on Sjogren's...especially since I have SVID.

Never hurts to try to get results...give them a call. I have gotten results by requesting the CD of the MRI (in the US, they commonly give CD copies for patients to take to other physicians)...they usually stick a copy of the written report/results in with the CD. Then I can read results before doctor calls and I'm also prepared with questions (since I've already seen the report). The worst they can say is NO.
This is old research from the BMJ from 2003, so no mention of Rituximab, but a good bit at the end about immunesuppression for SVID of Sjogren's - and for me an interesting mention of paired oligloclonal bands in CSF being an indicator of CNS involvement in SS. Central nervous system involvement in Sjogren’s syndrome -- Soliotis et al. 63 (6): 616 -- Annals of the Rheumatic Diseases
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Sjögren’s, Hashimoto’s and Systemic Sclerosis with Raynaud’s, Erythromelagia and small fibre polyneuropathy, GI problems top to tail, degenerative disc disease and possible additional autoimmune diseases
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