Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Men vs. Women - The AS Diagnosis

I can't get my NHS rheumie to do an MRI above the lumbar area, even though a private rheumie and a musculoskeletal specialist radiologist have both suggested a full spine MRI would possibly help confirm an AS diagnosis (given that I have at least one romanus lesion a bit lower, and as much of my pain is in thoracic and cervical area as lumbar and SI).

I've also been dismissed because of my age - was 48 when first presented to the NHS, even though classic symptoms date back to at the latest age 15 (but possibly earlier - used to sleep on my back with knees bent up from about age 8, because it was the most comfortable for me, and also had problems lifting arms above shoulders, and often had sore knees and didn't like running though could walk miles).

My pain all started in lumbar but cervical pain & restriction of movement has increased significantly in the last couple of years. I went to my pain specialist about it early last year, asking for an MRI but he said there was nothing wrong with me & I didn't get the referral.

I really hate that people can be so closed to this disease affecting men AND women. One of my friends is a Chiro & even he said "I highly doubt you have AS because you're female"!!! It's as bad as the gynae who told me I couldn't possibly have endometriosis because I was only 19 but when he did finally do the laparoscopy, oh look, there it was!! I get that there can be some common things in a group of people with a disease but I wish the medical profession wouldn't close their mind to you having a certain condition because you don't tick all of their little boxes! We don't all react identically to medications we're given so why would we all present identically???

One other thing SUPNut - I had a well know Rheumy dismiss all of my results (3 positive HLA-B27 tests and extreme symptoms) and tell me I didn't have it. The A-Typical mindset is what is most damaging. THIS site and AAS articles have been my strong suit to have back up.

I just PRAY my General Practioner (since I don't have insurance, I don't have a Rheumy I can see) doesn't move on any time soon!

I've been dx'ed with undiff spondy, but my current rheumy thinks it could be AS.

For me, started with gastritis / IBS (inflamed bowel) at age 30.

Then an odd "rib" thing at age 35, followed by severe tendonitis in my hands / wrists that required cortisone and PT 6 months later, then shortly after my neck really really flared (realized my neck had been getting worse and worse over the few years prior), then 2 years later, my SI.

Then slowly over time other entheses.

So for me:

GI followed by peripheral entheses, followed by neck, followed by SI, followed by everything else.

I know different types of spondylitis can begin and thus branch out from other parts of your spine rather than your SI joints(which is the case for me as mine started in my thoracic), especially in the enteropathic form. But I have often wondered if AS(the kind not associated with psoriasis or IBD) is different from this and only originates from the SI joints. Or alternatively if there are even other forms of AS(not associated with other things) of different etiology. I would kind of think the latter but I'm not sure. Moreover, it could just be an old accepted process (that may or may not have been for good reason) to more openly assess the SI joints because (and this is only speculation) they may have shown the disease earlier, better, or in some cases more apparently. Maybe that is what they discovered over time. I know for me, from everything I notice those (the SI joints) bother me the least and happens to be the farthest from where my pain started.

Hi Sue22,

My experience looks to have been similar to yours. I'm 25, my symptoms started at age 20 with IBS. I since had costochondritis, what I figure you mean by the odd "rib" thing, pains in my neck and lower back and just general aches and pains. Mostly I just use anti-inflammatory gels and high-strength fish oil capsules for my symptoms with a bit of exercise but in the last week i've had a lot of trouble sleeping. If I try sleeping on my back I get kinda paralysed for a second. Have you had any experience with anything like that and how did you manage it?