Wednesday, December 8, 2010


Dr today. He was very, very open about the idea of Behcet's

My current Dr was at some convention, and saw the Dr I saw 2 weeks ago ((the lady rheumatologist I met with 2 weeks ago who told me nothing was wrong with me) and he took the opportunity to tell her how he felt about the way she treated me.
Regardless, she admitted she needed to write to me about the way she acted, she was frustrated because she couldn't figure out what was going on. 
Anyway, point is, they got to talking.

Remember, Earlier this year when I had the endoscopy and colonoscopy.
Apparently they didn't check at the time or thought it was no big deal, because I didn't have the symptoms I have now, but there was evidence of Sarcoidosis. The ONLY reason it was even brought up is because when I was in the hospital, the GI Dr came to see me and he was the same one who did the biopsy. GI Doc apparently told the other Dr (the lady rheumatologist I met with 2 weeks ago who told me nothing was wrong with me) "Oooooh this makes sense now!" and explained it to her  and she told my current Rheumy.

What I don't understand is why she didn't tell ME - and furthemore why she insisted nothing was wrong with me when she knew this information.

So now, unless they have the biopsy tissue still (doubtful) I have to have that done again and a whole host of other tests that I've ALREADY HAD DONE.

The kicker? It's so rare in America that they never even thought to check it. Only I would catch a rare disease.

If it's not that, next on the list is Behcet's. Everything fits, and this is where he would have gone first without knowledge of the biopsy.

I've read up on both, and both fit. 

He does not think it's Reiters because that would have cleared up on it's own by now unless it's chronic.
I'm on prednisone daily indefinitely and I'm starting something new called Clochorine.
Anyway, there's the plan for now.

Sarcoidosis is an autoimmune disease disease that causes clusters of cells to go bad and it affects multiple organs and causes them to become inflammed, and can be life threatening if the lungs are affected (Ive had a dry cough for 6+ months)

Beh├žet's disease is an autoimmune disease that results from damage to blood vessels throughout the body, particularly veins. In an autoimmune disease, the immune system attacks and harms the bodies' own tissues.

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