Sick for 7 years, getting worse no answers scared!
 

Hello there. I'm wondering if anyone out there has a similar story or has any of these symtoms. I'm 28 years old and haven't been able to work in 7 years!

At 22 I suddenly became very sick (within a week) I couldn't get out of bed one day I had sores on my scalp, in my mouth and fingers, racing heart, low bp , dizzines, weakness etc. After 4 years they said I had dysautonomia an autonomic disorder. Fine I fit the niche..

Fast foward now to about last year I started getting new symptoms and most recently in the past month very scary ones. Still having sores on my tongue and fingers (pic below btw they were biopsied came back chronic inflammation) and EXTREME weakness in my body and internal vibrating/tremors. I haven't hardly been able to get out of bed for 3 weeks. Then I started having mucus in my stool and one episode of the mucus having blood in it. I'm dizzy constantly and so I tried stopping all gluten thinking maybe it was a reaction. I have been gluten free for 3 weeks but no change. I also get brain fog, depersonalization, my feet are always FREEZING to the point it hurts sometimes, sometimes night sweats, my joints mostly my wrists and knee will ache, stomach problems and many more

I can't get into a neuro and gastro till later next week and my rhumey refered me to Mayo Clinic in Dec. They cannot tell me what I have only that I have "some kind" of autoimmue disease. I'm really getting scared now with these new developments all my BW comes back normal along with any other tests I did haev one episode of elevated ANA years ago but they never told me what to do about it. Prednisone is the only think to ever make it all stop but I went into adrenal crisis when they pulled me off it too fast and it took me almost 5 months to then be weened off of what was suppose to be a week trial run.. Anyone had something similar or can point me in some direction plz! I'm desperate and scared!

I have pics to the sores in mouth and fingers but I can't post them cause I don't have *the required number of* posts

Many autoimmune diseases occur even when patients are sero-negative. It certainly sounds as if you are falling into that category.

It looks like you have a good plan, but it will take some time. Keep track of all your tests/records during this diagnostic stage. They may come in handy further down the line.