A gut feeling

   Where we left off: It was in June that I was kicked to the curb by the rheumatologist. The one I used to trust when I got my arthritis diagnosis.
All summer long, I just felt so exhausted. I felt like I had the flu. Some days I was so exhausted, I didn't want to get up. Every muscle in my body ached. Oh I had some good days, but mostly there were the "meh" days: Not good, but functioning.
In September, I had a bizarre thing happen. I won't go into a lot of detail, but I developed lesions on my body, unbeknownst to me, but spotted by an alert nurse practitioner. She decided to culture them, even though she felt is was viral (as in shingles)
   Imagine her surprise (and mine) when they came back negative for viral or bacterial. They were just "there". I spoke to a cousin about them and a friend of hers happened to overhear a bit of conversation and described her own personal story of her disease. I called the nurse practitioner back and mentioned this disease to her and she made another appointment for an actual biopsy (as opposed to a scraping for a culture)
   By the time I got to her the following Tuesday (I had made the appt on Friday) I was violently ill. Again, I will spare you the details, but this really was horrible, like a noro-virus of some sort or food poisoning. She said we could hold off on the biopsy. HA. If I am going to be miserable, I might as well be really miserable.
   While there, we discussed the possibility of the disease that the friend had mentioned. The NP did not feel it was that, however, it got her thinking. She had a gut feeling that it was a disease called variously Behcet's Syndrome or Behcet's Disease. (pronounced Bay-Shet's after the doctor who discovered it) I had never heard of it, but you can bet by the end of the day, I would know about as much as can be known. I looked up every website imaginable. In short, it is a very common disease in the Middle East, Japan, and Asia where it affects more men. In the US, where it is extremely rare, it affects more women. It is an auto-immune disorder caused by vasculitis. (an inflammation of any number or type of veins) After reading about it, I fit nearly all the criteria, which was frightening.       
   What was even more frightening was that I had had these symptoms since I was a child. It explained so much of not only why I was currently so sick (quite possibly a flare-up) but why I had the arthritis diagnosis those many years ago. When the biopsy results came back, she was happy to tell me it wasn't cancer, but the report seemed to be consistent with Behcet's. I gotta tell you, I was
happier more than I was sad. Was this the answer after all these years? I cannot tell you how many doctors I have seen and not one, not a single solitary one had ever breathed a word of this disease to me until now...and it wasn't even a doctor. It was a nurse practitioner with a gut feeling and the wherewithal to say it aloud. DH was so upset: The rheumatologist I had seen in June had a list of all those symptoms and yet...she said they were meaningless. If a "rheumy" can't figure out an auto-immune disease, who can? To be fair, it takes many years to get a diagnosis: You see one doc for this, another for that and there isn't really a single doc to put it all together...and it is "rare" here. Although this seems bogus to me! If it is rampant in other countries, why aren't these people of that descent affected her in America, the melting pot? Is it because no one is looking for it? What the heck? I find that really hard to believe...surely it isn't as "rare" as "they" say? Stay tuned!

http://www.behcets.com/site/pp.asp?c=bhJIJSOCJrH&b=260521