Quote:
Originally Posted by JoannaP79
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.
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Ach it's so sad isn't it? One day I bet most will be found to have autoimmunity if doctors keep checking. But they so often don't once they have landed their "all of the mind" labels.
So here's what I think you should do if you are in the U.K - or maybe anyehere depending on whether Sjogrens is taken seriously: Avoid the Schirmers and ask an optometrist or eye doctor to test you just for tear break up or Rose Bengal. The Schirmers sucks - it's just no good.
Then, whatever the outcome, find out what your inflammation levels are doing - this is cheap and easy to do along with your full blood count. If there is anything that suggests that you have inflammation (in my case inflammatory bloods and spinal fluid - which the rheumatologist no.2 still managed to ignore!!) then find an oral consultant/ dentist who can perform a lip biopsy. This is the only way you will get a confirmed diagnosis of Sjogrens or exclude it finally.
But you need to have a good reason to go through all these invasive investigations for a diagnosis because even if Sjogrens is confirmed through lip biopsy, bloods and CSF - they may not offer you any treatment beyond antidepressants or anticonvulsants. I was lucky to be misdiagnosed with RA five years ago but I've had to fight hard every step of the way to get the right diagnosis and hopefully an effective treatment. Most people with Sjogrens aren't as "lucky" and can't or won't persevere as I have. Best of luck, Mat