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Originally Posted by MAT52
I didn't qualify in the Schirmers test either - nor on the salivary one. This was a year and half ago when I was still on steroids though.
I've been reliably told by optometrists that this Schirmers is now thought primitive and redundant by eye doctors because many with dry eyes will produce some tears just because of the sheer discomfort. Certainly my rheumy team and my neuro aren't interested in how dry my eyes are now that my ANA has swung positive, immunoglobulins raised, inflammatory markers high and very positive lip biopsy. They tell me that I have a systemic connective tissue disease that they believe is primary Sjogrens.
Sometimes my eyes are very dry and I only score very badly in the tear break up and Rose Bengal tests for eye dryness but they never ask for proof from opticians or send me to eye doctors - they are happy to be led by my account of state of eyes and lip biopsy result alone I think.
I would not let them rely on Schirmers alone to rule Sjogrens out now. I know some with SS have only mildly dry eyes but severe neuropathy that can present like MS. I'm in Scotland and this is the fourth but by far the best Scottish hospital I've attended. Hope this helps.
By the way has anyone told you that you probably have ME or Fibromyalgia yet I wonder? When I have asked about these symptoms on other forums I'm often told that this is what others get diagnosed with when describing the limb weakness? I wonder if this is doctors being lazy and refusing to acknowledge an immune mediated SFN even when it's staring them in the face?!
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Thanks Mat. I have nothing else that points to Sjogrens which is why they won't go there. No positive Ana, no official dry eyes or mouth. My eyes are drier as the last schirmers two years ago caused significant watering whereas this time it didn't despite the discomfort. I'm thinking of finding someone privately and begging them to do it. It's hard finding anyone who will agree to it, and all the best consultants say they won't do it. I have so many tests I still need to tick off. You all know how it goes.
Fibromyalgia was the first name given by some random rheumatologist assessing me via work. This was when I first became affected and realised I couldn't keep up with my job. I get so annoyed by the fibro term as it really seems to be code for 'something causing pain or discomfort in your tissues somewhere somehow'. I read the online report stating that a large proportion of fibro patients actually had Sfn. ME has also come up. I have met other ME sufferers as part of a local group. When they describe their symptoms they sound like full blown autoimmune issues.