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Old 08-10-2016, 04:14 PM #36
MAT52 MAT52 is offline
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Join Date: Feb 2015
Location: Scotland, UK
Posts: 529
10 yr Member
MAT52 MAT52 is offline
Member
 
Join Date: Feb 2015
Location: Scotland, UK
Posts: 529
10 yr Member
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Quote:
Originally Posted by Pyr2 View Post
Its so great to have an answer! MAT I'm truly jealous. Not to steal your post but a PET/CT found old calcified nodes which my neuro and a pulmonolgist said were highly suspicious for old sarcoidosis. Im wondering if that was the trigger for all of my nasty cranial and nerve stuff I have going on. Best of luck, prayers answered, now you can forge on with peace of mind. And I am just the opposite of you - low c3 and c4 complements!
L
Hey low C3 and 4 is much more relevant than my raised ones L. I think I have had spells of Sarcoidosis when the P Sjogrens started - years of dry coughing fits lasting for hours and comimg on randomly with no explanation apart from probable reflux. I'm almost jealous of myself after five years of feeling tied to a disease I never fully related to.

I will post this on the main forum for others but I thought this Arthritis Research diagnostic tool was particularly interesting. I've had years of wondering what was causing my high ESR and CRP when I had very little joint pain. Then today I read this I learn something everyday. Apparently most people with PSJS have a very high ESR often but, unlike with RA, this doesn't correspond with the level of disease activity. At last I understand why my levels are often so high despite no swollen joints.

"People with Sjögren’s syndrome often have very high ESR levels regardless of whether they feel well or ill. In Sjögren’s syndrome, the ESR or other measurements of inflammation such as C-reactive protein (CRP) aren't very useful in assessing how active the condition is – unlike in lupus or rheumatoid arthritis."

http://www.arthritisresearchuk.org/a...diagnosis.aspx
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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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