Ankylosing Spondylitis HLA B27 Negative
Posted , 16 users are following.
My experience in the UK is that, if you have AS but test negative for B27 you will almost certainly not be diagnosed; no GP will take you seriously and even if the X-Rays show positive fusion of the sacroiliac after years of sacroiliitis, and you have related symptoms (e.g. spinal fusion, costochondritis, Crohn's etc - this will be put down to old age, even if you are, like me, in your early 40s - age of AS onset 24). I was referred to a rheumatologist (not a specialist in AS) who refused to take any blood tests/MRI etc as I was B27-; there are two AS experts near to where I live but as they are not in my catchment area (central London) I cannot be referred to them. I cannot afford to go private. However, I am on a Low Starch Diet and this relieves my symptoms to the extent that some days I wake up with no pain! I am desperate for a definite diagnosis as I constantly worry about my spine/symptoms but there is no one prepared to help. So much for the NHS.
0 likes, 16 replies
scott54488 Guest
Posted
I'm a 40 year old male who recently got diagnosed with AS and have a negative HLA-B27. Thought X-RAY & MRI got the diagnosis. Also I fit all the other markers for AS and have been suffering with it for 10-15 years with progressive join pain and stiffness before the diagnosis. Just started on Humira and taking anti-inflammatory to help. Everything in the I tried helped for a time 2-4 months then quit working. I'm hoping Humira and anti- inflammatories is the key to getting my body healthy.