Thank you for the welcome
It's hard to go to what feels like a million different doctors and not really have any clear answers. I'm sorry you're in a similar place, I hope you're able to have some answers soon as well! I don't have that rheumatologist anymore because everytime I went in to see him he would ask why I'm there, like I shouldn't be coming to him for help, so I switched. He actually thought I had Sjogrens for a while, he did the sand-paper test in my eyes, which was very uncomfortable, and said I was negative, think he did the blood test as well.
I have an aunt who has MS, she kept telling me it sounds like I have it too, but the MRI was clear. She also has Fibromyalgia as well as one of my uncles.
I know I'm not making these symptoms up, not sure how that would even be possible, so it's just about finding a Dr who tests for the right thing I suppose. It's hard to feel the way we do and not have a diagnosis ontop of that, people tend to look at you like you are attention-seeking, or just making it up.
I appreciate you responding Jenng, it's nice to know I'm not the only one going through this.
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Originally Posted by jenng
First of all, welcome--you should have others responding that have been here much longer than I have. I am sorry to hear you are having so much trouble at such a young age.
I can relate to having positive auto-immune bloodwork, then it turning negative. I had a positive ANA, C-reactive protein and anti-phospholipid antibody test when I was 35. Definitely had symptoms, mostly of peripheral neuropathy in face, tongue, hands, feet and up the left shin. My eyes were slightly drier than normal as well as saliva, I have to have water nearby to eat certain foods. So we were thinking Sjogren's. But I didn't test positive for those antibodies. I was put on Plaquenil anyway, and now at 43 I am taking a break from it because my PN is as strong as ever and I continue to have completely normal bloodwork.
First question--do you have any family history of autoimmune issues? Having once positive labs along with family history should get a good rheumatologist to treat you even if current labs are normal. Treatment can be a rough issue if they can't decide on a working diagnosis, but plaquenil can be a good place to start.
In terms of your neurologist--many specialists can be lacking in bedside manner and patience. Sometimes you have to work with what you have with insurance, but if you have the capability--absolutely doctor-shop until you find someone you feel comfortable with. If you are lucky enough to live near a University/teaching hospital, I would start there in regard to specialists.
And a good primary doctor/internist is key to keeping everything organized and on track.
Good luck and again, welcome!
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