Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Age of Diagnosis

Hi Sharon,
I was diagnosed at 39, mild sacral and back issues 10 year previous. Repeated severe iritis is how I got diagnoses with AS.
Alecia

Hi Sharon,
My mom was diagnosed in her 50s, but she had had symptoms on and off since her teens. Her diagnosis was a result of my own, at 25.

I am still undiagnosed at age 47 although testing positive for the HLBA27 gene recently and displaying many AS symptoms over the last 30 years!
Good luck to you MUM!

My mom is in her mid 80's. She has not been diagnosed with AS, and, as far as I know, she has not even asked a DR. if she could have it. However, I suspect from what I'm now seeing (her neck is frozen, so she can't turn her head, her hips hurt her etc.)that she, too might have it. I don't know how long she has had any symptoms. She has dementia, and would not be able to answer that question.

I was diagnosed when I was in my 40's, but I first started having symptoms when I was in my mid 20's.

I'm sure you know that the results from the HLA-B27 test really doesn't mean much. If it comes back negative, it doesn't mean that she doesn't have AS. That's just one diagnostic tool, and in my opinion, not a very good one.

I'm not a doctor, but I don't know why she would be too old.

In connection to what Kat said, my new rheumy told me on average it takes a women 8 years to get an AS diagnosis, partly because of the fact it is considered a mans disease. He was very impressed it only took me 2, but I figured if I keep on the doctors eventually someone will do something, I did get the run around though. The squeaky wheel does get the grease.

Just my two cents........I was diagnosed at 26, I am currently 31, MAN DO I EVER HATE SAYING THAT!!!!!!!!!!!!!

Amy:)

Oh my goodness, I just wrote a big long post and then went and closed the window without sending it! Guess I'll have to make this short and sweet.

I'm 33 and have had symptoms since I was a teenager. A few years ago when I was having so much back pain, I was tested and it was found that I have the HLA-B27 gene. But because I was female, my doctors didn't feel like I had it. I was referred to a rheumy who at least acknowledged the possiblity that I had AS. He finally diagnosed me with AS about 6 months ago after all other treatment had failed and my symptoms were increasing. I've got a new PCP now that is really helping me. She has arthritis and I was excited when I found out she had a craniotomy so she knows first hand about that also.

My mom had a blood test about a year ago but they didn't look for the gene. I finally convinced her to ask her doctor to test her for the gene. I guess she's hurting pretty badly at the moment. A year ago she was surprised to find out she had arthritis because she didn't hurt all that much. She said her hands hurt her but she thought that was old age. I just find it interesting that about 10 years ago, she was telling me that my pain was all in my head. Guess she's finding out the hard way what it feels like for people to think that.

Sharon

I was kind of like Amy...My Rhumy first thought I had Reiter's Syndrome and people would say "thats a mans disease" or "that is a sexually transmitted disease" I did feel kind of odd but the longer it went on and more testing and more symptoms came out he finally made a diagnoses of AS...I was 28. I am also HLA-B27 negative.

My Immunologist that I have been with for 2 years says right now we are sticking with the AS diagnosis BUT that there are more than 150 known immune disorders and that with time if I start having different or other symptoms then the diagnosis could be changed.

It is weird to hear everyones story because like me some of us never had problems then "BAM" all of a sudden it came on like gangbusters, some of us have had problems since day 1, some of us have had Iritis some have not, some have the IBS or colitis...it just amazes me but then I realize everyones immune system is different and there has to be a reason some of us have a mild form and some of us have a more severe time.

All I know is the life I use to have and the life I have now sucks in terms of stamina and being pain free. Bill and I were talking over the weekend at all I use to do, I have gone from doing 100% down to probly 25% on a good day and I dont have many good days anymore.

I have had so many problems with my lungs now that when I am on the phone with family or friends they are like are you walking or running......Im like "no" I am walking from the bedroom to the kitchen...lol I never knew you could have so many problems with your lungs.

I have been really down since I have had to put Humira on hold once again....am I ever going to get to try it....I dont know i doubt it but right now the only thing it seems I can do is pop pills and I hate taking so many...just dont know what else to do.

I REALLY admire all of you that can still work full time or even part time...I just dont see how you do it.

Hope your Mom gets good news, and how are you doing?

Lisa

Hi Sharon,
I was tested for hla-b27 and sent for lots of xrays in January 2006(I had just turned 50). With those and my health history, my GP diagnosed me with AS and sent me to a rheumy, who also diagnosed me with AS. I had never heard of it before, if I had You can bet I would have been looking for a dx before then.

My previous GP told me I had arthritis. I had symptoms since 1987(31 years old) which eventually became worse and more numerous until I did finally go to a new GP and told him my arthritis meds did not work. I had been on quite a few different ones including celebrex. I had also been to the orthopaedic doctor for various things over the years including knee pain, back pain, degenerative disc disease, bursitis in hip, plantars fascitis, neck pain, sciatica, and shoulder/elbow pain. In addition to those things, I had developed pleurisy at least a couple of times a year, occasional anemia, fatigue, carpal tunnel, tarsal tunnel, tmj, wierd pain that went from place to place, and finally an extreme ripping pain when I sneezed. There was pain that got worse when I stopped activity(I really couldn't understand that one). By the time I went to the new GP and rheumy, I was eventually getting so stiff in the mornings that it would take me a couple of hours to get warmed up. Riding in a car for any distance was becoming more difficult. Working a job seemed near impossible. I either just didn't have the energy it needed or that gremlin in my body would start up again. I couldn't understand how other women could work regular jobs, much less be able to function when they got off work. I was a hard worker and anything but lazy. I can't remember when I slept a whole night. Literally cannot remember. Years. I would wake up with back pain, at first thinking my back was hurting because I had to go to the bathroom.

My Uveitis/Iritis kicked in about 3 years ago. It also was not diagnosed until last year when the rheumy advised me to go to the opthomalogist. The optometrist I was seeing had been trying several different drops until he eventually hit the right one - pred-forte. He didn't send me to an optho. He was talking about it, but didn't when the pred-forte kicked in. When I went to my new optho, she diagnosed me with recurring Uveitis and dry eyes(stemming from the AS she says).

With our insurance you have to have a referral from your GP to go to anyone but your GP, and then they have to be in the "network".

There you have it. Perfect example of how a woman can be mis-diagnosed over so many years until damage occurs and she has a primary care doctor that is up to date and gives a "you know what" . I hope your Mom checks into this and does not just attribute it to arthritis or old age(even though 50 is NOT old, no matter what you young ones think).

Good luck to her and you, Wanda

I'm 30 (31 in Aug.) and although I haven't officially been diagnosed as having AS as of yet (my ortho and physical therapist both think I have it), I have been told that whatever I have has been there for a long time.

I am also HLA negative.

Hey Sharon,
I wasn't 50 but it was a 40th Birthday present that I will never forget.

Keep Kickin'AS
Chris