Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group No Genetic marker - should I be here?

Hello all,
After 8 years of worsening pain I have found myself here after thinking about the one thing that made my right side back pain different or weird to anyone else back pain and that is that it gets unbearable towards the late hours of the night / morning but better as I am eventually able to get up and start walking around.

I can bend down and touch my toes no problem but getting back up again is impossible. Worse after sitting - or rather getting up from sitting. For the last year I have had pain in my left hip joint which has eased now actually. I currently have a terrific pain in my heel of left foot.

My gut is utterly shot to bits and I know I have a problem with wheat but then apples can make me bloat massively as well or oats for that matter. I also suspect dairy. Weight gain has been horrible for last two years - horrible and unexplained. I am heading towards my 50's.

I would rather eat my own arm than go to the docs but have eventually given up all hope and went. Just got my blood tests back which show me negative for the genetic marker. Awaiting an appointment with an orthopedic specialist where I guess they will do an MRI scan.

My recent visit to the osteopath I made her tell me what she thought of the state of my spine and she said 'very little movement and lots of degeneration'. I can hardly turn my neck - that's really got bad in the last year or so. My fingers feel stiff in the joints in the morning. Am knackered all the time.

So I read a bit about AS and it all seemed to fit for me - I started cutting out wheat and going starch free as best as I am able to and the back pain and general joint pain has eased up considerably - by at least 50% I would say.

Still - that blood test came back negative so my question is ....should I be here?

Marie, the HLA-B27 genetic marker is not a prerequisite for a diagnosis of AS. Many spondys are negative for the marker. And many people with HLA-B27 marker do not have AS ! Anyone who insists you need such a market is misinformed.

You need to be seeing a rheumatologist who specialises in AS. Check with your local AS group. For the UK, NASS : nass.co.uk/download/508a6c124fc1d/ For the USA, SAA : Spondylitis Association of America. Canada : spondylitis.ca/spondyloarthritis/related-conditions/anky...

A rheumatologist is whom you need to consult with. Notan orthopaedic surgeon ! A rheumy will order up the correct protocols for the MRI - yes, there are directives on what to screen for ! Initially, X-Rays are not much good as it takes years for the degenerations to show up on X-Rays. MRI is now considered gold standard.

So yes. You should be here <smile> Hope this has helped. Take care, go well -

Molly C - Keeping on, Keeping on (as we do !)

Thank you MollyC1i - I will have to try and figure out how I can get my doctor to put me forward to see a rheumatologist rather than an orthopaedic surgeon.
I have no idea how I am going to suggest that!

Hi Marie - just ask him. Don't be hesitant to put yr case.

First id a good rheumy. Might need to contact NASS (If I remember you are in the UK). NASS might be able to help out on that one.

Can't thin *why yr GP is suggesting an spine surgeon / orthopod. <scratches head> !!

My ortho wanted me to go to a neurologist. I insisted on a Rheumy. When I walked in with the images taken and my list of symptoms...from my freaky toenails to exhaustion I would experience and everything in between

I had never heard of AS before but I had a diagnosis within 30 minutes. And I am HLA-B27 negative and female. We tend to get the run around more than the positives and males...just the way it is because we usually present differently than the males.

Thank you all. I think I will have to gather courage and go and see them. x