I suspect that I have ankylosing spondylitis. My GP is dismissing me.

[Anonymous]

If you have this, can you share your experiences? How were you diagnosed? I would appreciate any doctor recommendations.

[Anonymous]

My daughter had X-rays to rule out

[Anonymous]

Anonymous wrote:My daughter had X-rays to rule out

An X-Ray does not rule out AS. It can take years before AS damage will show on an X-Ray. Nonetheless, X-Rays are done first because they are cheap. If AS is suspected but it does not show on an X-Ray, an MRI with STIR imagery should be ordered.

OP, what are your symptoms and did the GP give reasons for dismissing them?

[Anonymous]

Go see a rheumatologist. Arthritis and Rheumatism Associates are good

[Anonymous]

Have you had a blood test for HLA-B27? You can still have AS without having the gene, and you can not have AS with the gene, but if you are positive your physician may take you more seriously. And some doctors still have the old school mindset that AS is a male disease, so if you are female they may dismiss your concerns.

Make an appointment with a rheumatologist who can examine you and order x-rays and potentially an MRI if your x-ray doesn't show anything. The disease is progressive so if you believe you have it, getting it diagnosed as soon as possible will have a better outcome.

What are your symptoms? And good luck!

[Anonymous]

Anonymous wrote:Go see a rheumatologist. Arthritis and Rheumatism Associates are good

Great info. Do you recommend any particular doctor?

[Anonymous]

Anonymous wrote:

Anonymous wrote:Go see a rheumatologist. Arthritis and Rheumatism Associates are good

Great info. Do you recommend any particular doctor?

Where do you live?

[Anonymous]

Arthritis and Rheumatism Associates is what I would recommend. Dr. Potter in their Wheaton and Onley offices is amazing but I think any of their doctors would be good. They will do additional imaging if needed and blood work to help dx. There are many medication options and they should help you feel better and stop progression especially if you're not at the point where you have damage visible on an X ray.

[Anonymous]

If you have a normal x ray at your age and a normal HLA-B27 you don’t have it.

[Anonymous]

Anonymous wrote:If you have a normal x ray at your age and a normal HLA-B27 you don’t have it.

This is not accurate.

First, OP did not give her age. AS usually occurs before age 40 but some dismiss the pains as just getting older and so are not diagnosed until well after that.

Second, as explained above, it can take years for AS damage to show on X-Rays.

Third, if you are HLA-B27 negative, it is very likely that you don't have AS, typically the most severe form of spondyloarthritis, but you certainly can have another form of spondyloarthritis, which can be as painful as AS.

OP, have your GP run tests for ESR and CRP. One or the other or both is often, although not always, high in those with spondyloarthritis. These are not specific tests but can be a clue.

[Anonymous]

I have it and was diagnosed four years ago at the age of 39 (I'm a female) by a rheumatologist. She started with x rays for insurance purposes which showed some degenerative properties in my spine. After that she was able to order an MRI, which showed even more and according to her, is a better way to see the properties of AS. I tested positive on the HLA B27 blood test, and my symptoms lined up. I was having a lot of unrelenting pain in my SI Joints (which I originally thought was just lower back pain). I would also have what I called "flare ups" a few times year when my upper back would freeze up, then it was my neck, or my ribcage would hurt or my hips would literally freeze up in pain and I could barely walk for a few days. I did several months of PT which helped just a little.

My rheum then put me on a biologic (Cosentyx) and I've had excellent success with it every since with zero side effects. I can sometimes feel the stiffness and aching in my SI joints when I'm coming near the time I need to take my next injection, but then it goes away right after I inject. I feel so fortunate.

Also, the more I move, the better I feel. If I have a few days of laziness or am sick in bed for whatever reason, I start to stiffen up and feel the pain again. Exercising is the best remedy outside of the biologic.

[Anonymous]

Good advice here, OP. Keep pushing forward! AS is debilitating fast, as you know. I believe it is hereditary. You are smart to follow up.

[Anonymous]

Anonymous wrote:

Anonymous wrote:If you have a normal x ray at your age and a normal HLA-B27 you don’t have it.

This is not accurate.

First, OP did not give her age. AS usually occurs before age 40 but some dismiss the pains as just getting older and so are not diagnosed until well after that.

Second, as explained above, it can take years for AS damage to show on X-Rays.

Third, if you are HLA-B27 negative, it is very likely that you don't have AS, typically the most severe form of spondyloarthritis, but you certainly can have another form of spondyloarthritis, which can be as painful as AS.

OP, have your GP run tests for ESR and CRP. One or the other or both is often, although not always, high in those with spondyloarthritis. These are not specific tests but can be a clue.

Right so as I said if you are HLA B27 and normal X-rays it’s not AS. ESR and CRP are extremely non-specific inflammatory markers and can be elevated in everything from infection to cancer.

[Anonymous]

I changed GPs because mine would not take me seriously either and would not write a referral. Had the new doctor order a HLA-B27 test which was positive. He ran all the other markers and by then my CRP was elevated. Rheumatologist diagnosed it as axSpA, as Xrays were clear. She did not order an MRI, but wanted me on Humira or Remicade. I'm in the midst of getting a second opinion, with hopefully more imaging.

I second the recommendation for exercise. Mine is inflammatory pain which gets worse with rest. I've also had decreased pain by watching what I eat, esoecially starchy food.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:If you have a normal x ray at your age and a normal HLA-B27 you don’t have it.

This is not accurate.

First, OP did not give her age. AS usually occurs before age 40 but some dismiss the pains as just getting older and so are not diagnosed until well after that.

Second, as explained above, it can take years for AS damage to show on X-Rays.

Third, if you are HLA-B27 negative, it is very likely that you don't have AS, typically the most severe form of spondyloarthritis, but you certainly can have another form of spondyloarthritis, which can be as painful as AS.

OP, have your GP run tests for ESR and CRP. One or the other or both is often, although not always, high in those with spondyloarthritis. These are not specific tests but can be a clue.

Right so as I said if you are HLA B27 and normal X-rays it’s not AS. ESR and CRP are extremely non-specific inflammatory markers and can be elevated in everything from infection to cancer.

I don't know why you are insisting that if you are HLA B27 negative and have a normal X-Ray you don't have AS.

AS is commonly used to refer to spondyloarthritis, of which there are several types, more generally. The only type for which the vast majority (but not 100%) are HLA B27 positive is the ankylosing spondylitis type. The damage often does not show up on X-Rays because it usually takes years for that happen, and this is as true for ankylosing spondylitis as it is for the other types of spondyloarthritis. Many with the latter are not HLA B27 positive.

Of course ESR and CRP are non-specific--as I said in my post--but taken together with other symptoms it can point to good reason to investigate further spondyloarthritis, or as many would refer to it, AS, as a cause.