Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group How I kicked AS - not what you might expect

Hi all,

Heres a short story of how I finally kicked AS permanently. Perhaps not how you might expect though.

I was diagnosed with AS from a rheumatologist based at London Bridge Hospital, UK in early 2015. Following MRI, x-ray and blood test (which was HLA-B27 negative), I was told categorically by Toby Garrood that I had AS and there was nothing I could do. He said I should just learn to live with the pain and take the anti-inflammatories. I asked what further tests I could have, to which I was told that there are no further tests required and thatthe evidence was clear. Unhappy with the diagnosis given and the results of the blood test (which indicated the contra), I then tried the NSA diet and after 6 months of strict no-starch there was no change at all.

Frustrated, I then went to a spinal surgeon at a different hospital (Wellington Hospital in London) who did a full new set of MRIs and a SPECT-CT scan which shows which bones are exhibiting the most pain.

Following a much more detailed analysis, the SPECT-CT clearly showed that there was no AS involved. The problem relates to a degenerative disk (probably caused by 26 years of hard squash playing). So, in essence, swapping one problem for another. I now feel I can pinpoint the problem and it can be operated on.

What was clear to me though was that if all you have is a hammer, everything looks like a nail. My rhuematologist clearly was only thinking of AS despite evidence to the contra.

I would advice anyone on this forum who doesn't fully believe or has serious doubts to go and get a second/third/fourth opinion from a different type of specialist. I would also strongly recommend SPECT-CT scans for AS problems if you have those available near you.

I hope my story helps you in some way. I guess my message is keep on searching and don't stop until you're happy or feel comfortable with the outcome if you can.

Best of luck.

RC

Thanks for sharing your experience

So, you didn't kick it. You were misdiagnosed. It's an interesting view from someone who had to deal with it in reverse to the usual.
Thanks for reminding people that they should stay in charge of their medical care. If it doesn't seem correct....keep asking questions.