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At a loss, multiple consultations still no answer...any idea?
Autoimmune Diseases | Last Active: Nov 28, 2023 | Replies (338)Comment receiving replies
I'm glad you've finally managed to get some information. The issue is that near me there are very few specialists that deal with these types of issues. I've been able to see general MD's who've been unable to diagnose me dispute noticing changes in my appearance. I'm 90% sure that it is some type of connective tissue disease... I'm awaiting to see a rhumatologist but given the shortage and covid situation it will be awhile. The fatigue and pain has noticeably increased, along with changes in my face. I can only hope that it will stabilise and that it doesn't continue to progress.
Replies to "I'm glad you've finally managed to get some information. The issue is that near me there..."
Oh, I meant to add your rheumatologist can definitely order the labs. There’s a lot of info on Sjogren’s, so if you become knowledgeable at least you have the questions to ask about treatment. Because you’ll also need to see an ophthalmologist, dentist, and possibly a hematologist.
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I can relate, small town, rural. Fortunately, Southern Vermont is trendy and the local hospital has an excellent neurologist. Can you be referred to a neurologist near you? Mine thought my issue was possibly Sjogren’s or autoimmune related as I have PBC which caused liver disease (which was only found out by a specialist in a large hospital 2 hours away...my local primary assumed I was an alcoholic!).
So. If you can try to see one. I’m not sure how I’ll be able to move forward with treatment and additional tests I need, but I can drive a few hours and get to a couple of good hospitals, as long as insurance covers it. So, don’t give up!