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.

Reply Flag this Discussion

1 Replies:

  • please look up the www.kickas.org website.. good luck i hope that by looking at this site you will find answers to your questions. ankylosing spondylitis is unigue to the suffer depending on where the damage is. it can effect the whole body, becasue it is a systemic disease.. it is very easy to sign up on the site and will be very helpful and informative. of course it is also a very good support system for when you are feeling down. most of the uses go on regularly, so you will feel like you are part of an AS family.if you need to contact me please do so through the AS site on www.kickas.org.God blessmellie(screen name)
    Anonymous 42789 Replies
    • September 20, 2007
    • 02:28 AM
    • 0
    Flag this Response
Thanks! A moderator will review your post and it will be live within the next 24 hours.