Discussions By Condition: Autoimmune Disease

Searching for proper diagnosis: HLA-B27, non-caseating granulomas, ACE, CK, MVP

Posted In: Autoimmune Disease 1 Replies
  • Posted By: Anonymous
  • August 30, 2007
  • 03:09 AM

This is my story:

I have mild scoliosis that was found on an x-ray and MRI. I tested positive for HLA-B27 in a blood test. I have had two colonoscopies which resulted in findings of inflammation and one small ulceration. I have a leaking heart valve. I have enlarged lymph nodes in my chest (CT Scan) that biopsied (mediastinoscopy) as non-caseating granulomas. I have an elevated ACE on a blood test. I have an elevated muscle enzyme (CK) level on a blood test. I was told I have sleep apnea after a sleep study. I have degenerative disc disease in my lower back with bulging discs according to an MRI. I also have pes planus with an accessory navicular, which is flat feet with an extra bone near my ankles.

As far as diagnosis, I have been told I have the following: Fibromyalgia, Ankylosing Spondylitis, Sarcoidosis, Sleep Apnea, and mild Crohn’s disease/colitis. I have been to many different doctors at many different places such as the Ochsner’s Clinic and the Mayo Clinic.

I have had many different drugs given to me but none have really helped. I have a tremendous amount of pain and fatigue that none of the doctors have been able to alleviate. I have constant bad muscle spasms everywhere. I have been seeing doctors for these problems for about 5 years. I have spent a tremendous amount of money and I feel I am right where I started. I am now 30 and I really don’t know where to turn for help.

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