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Old 08-05-2016, 03:59 PM #1
MAT52 MAT52 is offline
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Join Date: Feb 2015
Location: Scotland, UK
Posts: 529
8 yr Member
MAT52 MAT52 is offline
Member
 
Join Date: Feb 2015
Location: Scotland, UK
Posts: 529
8 yr Member
Cool Update: Primary Sjogrens

Hello. Well it seems I've tested positive at last for Primary Sjogrens! This is the definitive result from my lip biopsy where high numbers of lymphocytes were found in my four salivary glands. This is surprising because I don't have the oral dryness or severe Sicca usually associated. My Sicca is reasonably mild although it has been bad periodically - but manageable. My ANA points more to Scleroderma apparently, so I have no idea what the new rheumatologist will say when I finally get to meet him on 24th of this month. He must have suspected that my SFN indicated Primary Sjogren's because it was he who instigated the lip biopsy and parotid ultrasound.

My main symptoms continue to be the non length dependent SFN and ensuing proprioception issues. But I also have gynae problems, strange constipation and horrible palpitations after chewy, or dry food or icy drinks. Plus very nasty tasting mouth and salty saliva - not confirmed by any oral dryness or parotid issues according to ultrasound yesterday. All a bit baffling but I'm really hoping that this diagnosis will at last allow me to try further treatments that modify/ slow down the small fibre polyneuropathy - which I've long been convinced is part of an inflammatory process.

Meanwhile I wanted to add that I'm so grateful for the support I've had from this forum over the years. I have learned so much from you all.
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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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"Thanks for this!" says:
bluesfan (08-06-2016), echoes long ago (08-05-2016), EdmundUK (12-04-2016), ellsac (08-16-2016), glenntaj (08-06-2016), janieg (08-05-2016), kiwi33 (08-05-2016), mrsD (08-05-2016), pinkynose (08-05-2016)
 

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issues, oral, primary, sicca, sjogrens


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