Article Source: msnbc.com
from:msnbc.comUncertainty a huge source of anxiety in patients
Seeded on Fri Dec 3, 2010 7:06 PM EST (msnbc.com)
— Filed under: health
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Even worse than not having a diagnosis is being told that your symptoms are all in your head or that a disease is "too rare" for you to have it. Doctors need to admit that some rare diseases present with confusing, vague symptoms that come and go for awhile before becoming worse.
And before spouting ignorant "facts" about conditions they are unfamiliar with, doctors should do their research and get current on medical knowledge and treatments.
Yes, there are Caucasian Americans with Behcet's Disease, a rare, disabling autoimmune vasculitis that may include symptoms similar to lupus, MS, Crohn's, rheumatoid arthritis, chronic fatigue, and more.
Hey there ttmadison: I'm one of those Caucasian Americans who was diagnosed with Behcet's back in 1994 after suffering with severe recurring symptoms for years before being diagnosed. You're right about some doctors dismissing the symptoms; fortunately for me, I finally found a rheumatologist who hit the nail on the head after a lengthy 2-hour visit while pouring over my medical history, and I now have a wonderful family physician who understands that quality of life is important and is willing to prescribe symptomatic relief.
I can tell you that as someone who has gone through this situation, it is frustrating to be diagnosed with a syndrome that has little funding. There is no cure for this disease, only symptomatic treatment, which is a struggle to get on a routine basis for most.
For those out there still looking for an answer, hang on. Sometimes you have to be persistent. A lot of prayer helps, too. My prayers are there for all of you who are facing such difficult health issues.
In addition to not being able to get a proper diagnosis, or being patronized, which happens a lot in elderly patients and women who are in or near the "change" Things are often blamed on age or hormones. I don't think there's anything more stressful than a cancer diagnosis, the what now, what if's, and the fact that cancer, chemotherapy are both so unpredictable... it's kind of a throw it against the wall and see what if anything sticks..