Story about Behcet Syndrome , Mixed Connective Tissue Disease (MCTD).

Never give up hope.

Mar 15, 2022

By: RonnieJ

Year Condition Began: 2014


I've always seemed sicker than most. I had pelvic floor drop with surgery in 2013. Then in 2014 very suddenly I was coloring with granddaughter and felt funny. Saw a kaleidoscope in vision. Then one side of my body stopped working. I couldn't talk or walk right. Nothing on CT so sent me home. I went through seizures and unrelenting migraines for years. I had numerous other symptoms such as calf pain and joint pain, frozen shoulder, shingles, rashes, extreme sun sensitivity, night sweats and more. But doctor's were only focused on seizures. They would say don't give us too many things at a time. We can only concentrate on one or two at a time. Constant pain blocks and lots of medicine that made me sicker. Now after a decade I've found hope. My last pcp told me she thought Behcets. My new rheumatologist thinks MCTD, lupus or Behcets. My blood work always looks so good I was going to give up. It's very hard to find doctors who understand negative blood work does not define the picture. I'm now being treated even if we haven't completed diagnosis.
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