Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group How do you know if you have AS?

Hi,

How does one know if they have AS? I am an HLA-B27 positive female in my early 40's with chronic iritis for over a decade. Over the past four years I've had daily, yet to be diagnosed symptoms in my neck/head.

The discomfort varies from mild to excrutiating over the course of any given day (it worsens the more I move my head/neck). Previous to this I had occasional similar, but far shorter bouts similar to what I have now (usually they only lasted a day or so).

I read that for women, AS can start in their neck. I plan to see a rheumatologist to see what they think. Something is definitely wrong with me - I just have no idea what!

If anyone has any thoughts or can point me in the right direction. I'd appreciate it.

Many thanks,
Twyla

I have a female cousin with the same symptoms as yourself, HLA B27, primary problems iritis and neck pain. She was diagnosed with AS when still a young woman.

WELCOME, Twyla:



Your diagnosis is very easy; You have already found out You have AS. Problem with physicians is they really do not know how to best treat this disease. Once You have the "official" diagnosis, it can do more harm than good; that was my own experience, years ago, and although I like the newer biologic drugs, some of the NSAIDs that damaged me so much are still being used: BEWARE.

HEALTH,
John

Thanks for the info. I've seen so many doctors in the past four years, but no one seems to have come up with this diagnosis. They seem to have veered way off track if AS is what I really have.

I always mentioned my chronic iritis (which needs daily steriod use to keep under control) and that I'm HLA-B27 positive, but no one has thought of AS.

It's possible at this point that an MRI of my neck would show something. I have less flexibility on one side versus the other. I'd like to have an official diagnosis so I know what I'm dealing with.

I've never seen a rhemuatologist. Will any old rheumy do or should I look for something special? I live in Raleigh, NC, USA.

Thanks for the support. If I have AS, it will be invaluable to have this resource available. Not knowing what's been going on with my neck the last four years when the discomfort has been daily has been difficult. I'm pretty sure most people think I'm crazy. Only I know that's not the case!

Thanks,
Twyla

Hi Twyla, you definitely should see a rheumatologist - preferably one knowledgeable about AS and the Spondyloarthropathies, but you never really know if they are until you're in to see them.

It sure sounds like AS to me, but doctors don't like being told by the patient what the diagnosis should be, so don't go in telling him/her you have AS.

Pain lasting more than a couple of months, one side more affected than the other, chronic iritis, HLA-B27 ... frankly I'm surprised you've not heard inflammatory arthritis of some type before now.

Do you feel better upon moving around than you do after resting?
Do you experience stiffness and aching in the morning upon waking up? If so, how long does it last?
Does your pain abate with use of anti-inflamatories?
Have they tested your blood for indicators of inflammation called C-Reactive Protein or ESR (erythro-sedimentation rate)? What were the results? These numbers do not always elevate in patients with AS, but can.
Do you have gastro-intestinal issues?

If you get in with a rheumatologist and if that rheumatologist diagnoses AS, one of the related Spondys, or RA, you could be treated using the newer biologic medications depending on the criteria in your locale (they are also used to treat Crohn's Disease which is related to the Spondys). These medications are extremely helpful in patients with iritis. I haven't had it since 2005, when I started on biologics and I believe Mig, also a woman of a certain age here, lived with chronic iritis as well and has had a complete sessation of it since starting on biologic meds.

Please do get a referral to a rheumatologist ASAP.

Warmhugs,

Contrary to John's assertion that you "have already found out you have AS" your diagnosis may not be a slam dunk. Since uveitis and HLA-b27 are strongly associated with AS and other spondyloarthrapathies, there must be a reason why multiple doctors have missed, dismissed or rejected that as a potential diagnosis. I can't imagine that all of them were incompetent. That doesn't mean that I am saying that you do not have AS, just that your diagnosis could be AS, another Spondyloarthropathy, or another disease all together.

8% of the US population is HLA-b27+. Only a small percentage of them go on to develop AS. Uveitis is strongly associated with Spondyloarthropathies, but it can also be caused by infections, rumors, trauma, toxins and other autoimmune diseases. Uveitis can be associated with many diseases including:
AIDS
Ankylosing spondylitis
Behcet’s syndrome
CMV retinitis
Herpes zoster infection
Histoplasmosis
Kawasaki disease
Multiple sclerosis
Psoriasis
Reactive arthritis
Rheumatoid arthritis
Sarcoidosis
Syphilis
Toxoplasmosis
Tuberculosis
Ulcerative colitis
Vogt Koyanagi Harada’s disease

Only a rheumatologist can accurately determine if you have AS or a related disease.

Nice list, Stormy:

Behcet's really? Silk Road Disease--the one associated with HLA B51 and NOT HLA B27?

Uveitis is caused by rumors, too. We should more often hold our tongues! (sorry, You probably meant tumors, but in haste--something physicians have an abundance of--just created a cool typo).

Fully HALF of persons who possess the B27 antigen develop back pain severe enough to seek medical attention some time in their adult lifetimes. This compares with FIVE PERCENT of non-B27 adults.

HALF of these, or 25% of persons with B27 antigen will develop clinical features of AS and can be diagnosed with this disease.

There are six or seven other MHCs identified to be AS-prone, but B27 is the main one that over 90% of persons with AS possess.

IE-- it is not very prudent to seek grapefruit from apple trees, but if it makes one happy to look, have fun--Occam's Razor be damned.

HEALTH,
John

Stormy,
If Twyla has not seen a rheumatologist, I can see it as entirely possible multiple doctors have missed the diagnosis. Spondyloartrhritis seems little known and little suspected outside the realm of rheumatology. I am not sure why this is the case, but in my own experience it is true.

My daughter saw dozens of doctors who could come up with nothing better than a referral or a strong insinuation it was all in her head. Since diagnosis--by the first rheumatologist she saw, who made the dx on the spot--we have seen her GP, who was clearly uniformed about the illness, and she has been to the ER a couple of times where the doctors had never heard of it.

Twyla needs to see a good rheumatologist.

If you are unsure what you have... learn about AS and when you visit your rheumy, go prepared to help him/her.

Here at this website there is a "Pain map" link you can print off... als the "AS Patient Guidebook" that you can read and printoff as well. You can visit other websites such as SAA.org and review symptoms and diagnosis they have listed.

Best to be prepared and help your doctors, their time is limited when they see you.

Best,

Tim

It is not my list John. The list is courtesy of the National Eye Institute, a division of the National Institutes of Health. https://www.nei.nih.gov/about I am sure that you understand that, while some people who develop uveitis are HLA-b27 positive, the diagnosis is not exclusive to patients who are b27+. It is not a part of the diagnostic criteria and, depending on the population studied, 19% to 88% of uveitis patients are positive. http://emedicine.medscape.com/article/1201027-overview

It is also important to note that uveitis can and does occurr without the presence of As or another systemic disease even in HLA-b27+ individuals.

It is reckless and and factually incorrect to advise someone that the diagnosis is very easy or already known without far more information.


Obviously it was a typo.


I'm not sure where you got your 5% figure, but many experts would strongly disagree with you. Back pain is considered to be the single leading cause of disability world wide. It is estimated that 60% to 80% of Americans seek treatment for back pain at some point in their lives. If "only" 50% of HLA-b27+ individuals do so, they are below the curve. I think we both know that is inaccurate.

http://www.ninds.nih.gov/disorders/backpain/detail_backpain.htm
http://www.nlm.nih.gov/medlineplus/backpain.html
http://www.acatoday.org/level2_css.cfm?T1ID=13&T2ID=68
http://umm.edu/health/medical/altmed/condition/low-back-pain


It is also not very prudent to advise any and every person who asks if they could possibly have AS that, in fact, they do. But I have never noticed you missing an opportunity to do so. The original poster MAY have AS or a related Spondyloarthropathy. Alternatively, she may have uveitis without an accompanying systemic disease or she may have a different systemic disease. Without examining the patient, her complete medical record, her lab work and radiographic evidence, you have no possible way to know what she does or does not have.