I understand your frustration. One day healthy (1991 for me), the next something is going very wrong. I was originally advised in the opposite order, Internal med. spec, to Rheumatologist, to Neurologist. None of them ever ordered a test that was the correct test, 1991 to 2008. I was what I called "under diagnosed", symptoms, but no "why". It's a long story, which you can find on this site, but as I deteriorated in 2005, finding the "why" was my all consuming passion! It took 3 years, multiple specialists, and a daily journal of every aspect of my life/symptoms that could somehow correlate to each other. The key turned out to be a very intelligent doctor who didn't know what was going on, who put all of my "less than perfection" symptoms into a med palm device (containing the world's medical knowledge). Out popped HCP, a type of porphyria, ( I had never been tested for). Now it all made sense! Everything! The correct test for this disorder is a DNA test, which no one in my state knew anything about
, so it was done through a NHI Mt. Sinai study, which I had to investigate and find through the American Porphyria Foundation website. And, I now was armed with the knowledge to take the actions that would give me the best quality of life. I am expressing the disorder acutely, and am one of the unfortunate ones left in chronic pain, but I can now do everything right to keep the attacks as mild and infrequent as possible, avoiding all neurotoxins and drugs on the "do not take" list. My recommendation is to find the "why" to have the best quality of life, which you deserve!
Post Edited (Gods love in action) : 3/3/2014 9:50:12 PM (GMT-7)