Just curious...

My mom in now getting tested for the HLA-B27 gene because of how much pain she's been having lately but she thinks she is too old to have it. They did confirm arthritis after a blood test but they never looked for the HLA-B27 gene.

Is there anyone that was diagnosed with AS in their 50's?

Sharon

I'm not 50 ... but I was finally dx'ed at 39.5 after 10 years of being in pain

I experienced 11 months of severe pain prior to my diagnosis of AS at age 55. Also, I am HLA-B27 negative.

I tested positive for the gene HLA B27. When I am 52, my ex-GP said "I would not have believed that you would have tested positive for Ankylosing Spondylitis". Maybe if she had gone through my file she would have seen the many problems I was having with my spine. I never complain of the pain I was in, until I couldn't handle anymore.

I have fusing in my sacrum, and in my shoulders. I have disk deterioration in my lower back. I would have fusing there if it weren't for cysts keeping my disk apart. These cysts doctors won't operate on nor will they drain them, because they would refill in a short period of time.

I also have deterioration of my spine at my rib area, and some deterioration of disks in my neck area. My spine is a total mess. I have Osteopenia in my lower spine. Also a hairline on the L5.

I know how your mother feels, and pain she is in.

Take Care

Gerri

Eric was diagnosed at 9...so I guess that is not going to help you...

Sharon, it's entirely possible that your mother has had undiagnosed AS for many years. Women are often misdiagnosed because the disease presents so differently in us than it does in men, and men have been the foundation of almost all the research done on AS. Someday, the medical community is going to figure out that men and women are not the same physiologically. Until that day, women like your mother will continue to be un or mis diagnosed for many diseases.

Which blood test did they do on her, by the way? HLA-B27 is the only one that I know of when it comes to AS. Is it possible they checked her for the rheumatoid factor? If so, then she may have Rheumatoid Arthritis not AS (or both, which is possible).

Many hugs,

Me. I was diagnosed in my 50s. My doctor, based on the damage, etc. estimates I've had the disease for 30 years.

Good Morning from a fellow Okie.

I was diagnosed in my 20's so I am no help either. I wish the best for you and your mother.

Blessings.
Possi

I was diagnosed at 27, was fortunate with early diagnosis.... dad went through couple back surgeries and was mid 30's.

Tim

Diagnosed with AS at 47...B27 positive. My rheumy commented that this was a first for him -- someone my age with a first time diagnosis of AS. I'd had symptoms for over 20 years. By the time of my diagnosis, I had significant fusing in my SI joints and involvement in my neck & heels.

Diagnosed with RA at 33 or 34; seronegative for the Rheumatoid Factor though...

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

I have had problems since I was about 21. I am now 43 and was diagnosed last year with AS. The physician who finally tested me for the gene happened to attend a conference and decided to test me. I am forever indebted to her after all these years of misdiagnosis and being told it was all in my head I finally got someone to understand what I was going through. Right now there are 8 of us on the reservation who have the disease and we are all women. This disease is a bummer.

Oh my gosh, you got a weiner dog. I can't tell for sure but I think he has similar ears to mine. They don't lie flat like most weiner dogs. Cute!

Thanks to all that responded. She does have the HLA-B27 gene and her doc wants her to see a rheumy.

Pain hit me hard yesterday, jinxed myself. Had to stay home today. It finally rained so maybe the pain will let up shortly.

Sharon

My Kayla is my baby girl. When your not feeling good, she has a way of making you feel alright. Don't ever have to worry about a food disposal system, she is it. We do watch that we don't drop to much, she would be as big as a house.

Hugs
Gerri