I had been having a general problem since I was 8, it prevented me from being too physically active, but in general I could function in daily life.
At the age of 33, this condition started a slow worsening of my symptoms lasting until I was 39. Doctors all ignored my complaints without even ordering tests.In the febuary of that year, I suddenly felt dizzy and collapsed at work. I turned a reddish purple and stayed broken out in blotches that formed stripes for the rest of the day. My primary physician or that time was also an endo- but the episode was dismissed as "probably just something that's going around".At that point, things started getting worse a lot faster. I lost my job because I was so sick that I could no longer work and looked so obviously ill that the management thought I was going to die on the job. But I had my pension and 18 months of cobra insurance, and I thought for sure that they'd find out what was wrong before it was too late.
The doctors, endos, and radiologists ran almost $20000 worth of medical tests, used up my insurance and all my money, then said "duhh, we still don't know what the problem is ...", "so we're not going to treat you, ever, because we can't treat what we haven't diagnosed ", "Go find yourself an herbal specialist ...".
Carol van Reysen at the NIH basically said "we don't know what it is either, it's definately not in the programs we're funded to study", "we're sorry ..."
I've lost everything, including my car and most of my possessions. I have little-to-no chance of any diagnosis or treatment. I'm half-deaf and half-blind, and I can barely move without being ready to fall over. The last time I went to the doctor, I was ready for a heart attack by the time I got to the waiting room. I can't even get medicaid or public assistance, because the doctors refused to diagnose a definate condition. The law says I can't even complain about the doctors unless I find another doctor who does diagnose and treat me.
Right now I'm staying with a family member and preparing to die. I know death is coming for me, from the chest pains and how painfully hard it is to breath. Half of me is hoping for it to be soon.
