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How do you cope with Mixed Connective Tissue Disease (MCTD)?
Autoimmune Diseases | Last Active: 4 hours ago | Replies (130)Comment receiving replies
Diagnosed with MCTD several years ago after PCP finally ordered those ANA Titer tests etc . Rhematologist put me on hydroxychloriquine but it made me nauseous .now I’m willing to try anything. Constant and severe flu is what i feel now. Reynauds is the least of my problem . Sjogrens - sinuses etc not fun .The term “Flare up” suggests occasional relief . But no . After a Tooth extraction i seemed to get worse and worse. Now I have another infected tooth that needs to be removed but I feel so weak - not sure if I should. Go under anaestheia and undergo the violence of that surgery again .
Tri-geminal nerve was possibly damaged some years ago with dental work.
My rheumatologist said my PCP should send me to Stanford for rheumatology cuz they can consult with neurologists etc . Stanford wont have me cuz they are “impacted” and they dont give second opinions anyway. So now I’m left with no one .
Just you guys
Replies to "Diagnosed with MCTD several years ago after PCP finally ordered those ANA Titer tests etc ...."
As a fellow sufferer from MCTD, you have my condolences. It's a rare condition that none of my friends, family or acquaintances have ever heard of. I was diagnosed 7 years ago. Since then, there has not been much medical support except for being prescribed pregablan. I also suffer from facial neuropathy. So, how do I cope? Not that well. There appear to be few treatments available. Any thoughts?
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...update....got a rheumatologist! yay! and she ordered more tests. so far the few tests I have seem to show abnormal levels but not super out of range. Tell that to my symptoms! lol. Sjogens though she thinks.
My PCP has me on LDN . In 2 more months I will see if there is any diff. otherwise, prolly back on Hydroxychloriquine per Rheumatologist.
I try to walk at least 8000 - 10,000 steps a day. Last week on one day, I did 16,000! I just wanted to accomplish SOMEthing like my old competitive self. But cratered these last 2 days. I feel so much better when I am moving, I do not want to stop. Does one have to pay for a little exertion? I am talking about just WALKing and spread throughout the day. No heavy breathing etc.