I have been to Mayo recently and I still do not have an explanation of why suddenly at 28 and very healthy and skinny and athletic I became very very ill. It started with rapidly progressing vitiligo and black mucousal hyperpigmentation in the groin area and a small spot under the tongue. My liver enzymes, ANA, were elevated and rising rapidly, I have and had then a lupuslike malar rash and rapidly progressing spinal stenosis, spondylitis, degeneration, and herniated disks. I developed severe grade three NASH.
I have been told it is allin my head--I guess that causes severe pigment problems:)! I was diagnosed with polyendo dysfunction type 2, I now have diabetes, hashis, severe NASH, adrenal insufficiency, and sjogrens syndrome. I have IBS now, diverticolosis throughout my colon and lost my reproductive organs due to severe polycystic ovary and endometriosis. I have lost my salivary glands and surrounding lymph nodes to benign hyperplasia and lymphocytic infiltration and chronic inflammatory cells. I also now have bouts of incontinence, low or high blood pressure, nausea and failure to digest food, occasional bleeds due to chronic inflammation of the bladder floor or duodenum. I have about forty urethral polyps and have had an adenoma removed from my colon.
No one can tell me why I am so rapidly deteriorating. My liver is stable now and my inflammatory markers and sjogrens is under control, with my ANA only mildly elevated.
I believe I have and have had Addisons disease due to the mucousal hyperpigmentation, since I can't find any other reason for it. I am desperately trying to be treated for that. I have had excessive rapid weight gain around the middle from hashis and possible cushings also, so they think I'm not skinny enough to be sick with Addisons. I do very well with steroid supplementation.
I'm dying, with no single diagnosis, and all these normally mild conditions are very severe in me. Any help would be appreciated. What can I do to get a good overall diagnosis?