EDIT: Ontario, Canada
I'm struggling to look for a rheumatologist who takes Sjogren's Syndrome patients. My pain management doctor and family doctor are struggling and I'm trying to help them as well. It's not easy and unfortunately the Ontario Rheumatology Association's search tool isn't very helpful.
I've been diagnosed via saliva gland biopsy, ocular staining, and Schirmer test. I've seen three different rheumatologist who haven't even touched on Sjogren's Syndrome since med school and keep treating it as no big deal. Just take extra eye drops, moisturizing mouth wash, vaginal moisturizers, etc. None of them work and I'm in agony. I'm on Plaquenil but it only helps about 50-60% at most. My current rheumatologist doesn't want to do anything and doesn't even want me on Plaquenil or any rheumatic medication. I'm at a loss on what to do. It's even attacking my hearing, I'm losing hearing in both ears and use hearing aids now. Causes severe GI pain and a bit of blood. They found a lot do white blood cells during my Endo and colonoscopy with no signs of infections or polyps other than a lot of inflammation. Severe heart burn that happens all hours of the day and night. Agonizing vaginal dryness pain that doesn't go away and only ice can help a little bit. I've had all kinds of test to ensure I wasn't sick with any STIs or STDs, cancer, bacterial, viral and fungal infections. Nothing came back other than high white blood cells, severe dryness and weird discharge. Sorry for the amount of too much info details, it's just a severe case and I can't begin to understand why this rheumatologist wouldn't take me seriously.