Unknown Disease

[Miserableinmyskin]

Has anyone reached out to NIH undiagnosed Diseases. My husband has been experiencing this for almost for years. Literally everything that you all are describing has been his hellish experience. Right down to being diagnosed as a psychosis. Clearly it isn't. His quality of life has drastically changed. It affects his ability to eat, sleep, he's in constant pain and his body has been mutilated. Now it seems to have spread to his gums and teeth.

[FlowerGnome1]

Hiya. I think all of us have been dismissed by doctor after doctor. And all told we need psychological help. I've not even thought about the possibility that the NIH could help. My recent decision is to find a geneticist. Especially since my doctors have done labs and biopsies that have only been dismissed by other doctors. And let's not forget that my primary doctor also said I had no positive ANA, when in fact I had multiple positive ANA'S. Also lows and highs that have steadily gone their decided directions with no discussion besides prescription vitamins for deficiency. And they don't understand why we can deal with a level 10 pain and not ask for drugs. We'll, duh...I've been dealing with it for so long it's a normal day to day thing for me. 10 years now. 10!!! Started after I had lyme disease. And several years on antibiotics. Noone sees that part. Is this similar to what you've gone through? Where would we even behind to contact NIH!?!? I am headed to their website from here. We ALL NEED TO REACH OUT TO THEM TO DRAW AWARENESS!!!