Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Age and diagnosis

Hi Innana, Sassy & Jayne,

I was diagnosed at about 9 years old. I had hip pains after a figure skating fall and couldn't walk for about a month. I was also dx'd with mild scoliosis at this age. The curvature is located a few inches below my shoulder blades and I've been having a lot of pain in this area in the last year. Is your scoliosis painful now as well? It never bothered me until now. Sometimes I feel like I'm competely bent over in the morning and it takes me a long time before I can stand up and straighten out.

Karrie

Dear Holly - What an awful way to get AS. I didn't know Chlamydia had this connection. I have such an awful memory that I can't remember if I've had it or not. I do know that when I was delivering my first child I had a spinal and with my second child I was given two epidurals. The first one didn't take on one side of my body so they gave me a second and it did the same thing. I had a terrible backache for weeks after that. My back would hurt so much I couldn't lift my son out of his crib so I would just keep him on the floor next to me (during my last delivery I did without any drugs). Connection to AS?? Also when I was 15 or 16 I went snow tubing with some friends. One of the guys I was with and I went down the hill together, hit a large bump, went flying, and when we landed, he landed on top of me. I'm only about 4'11'' and weighed probably 95 pounds at the time and he was a football player. Yowch! I ended up with an enlarged tailbone - I think it at least got cracked at the time and healed without any treatment (I don't know what anyone would have been able to do anyway). So, is AS caused by one single thing or is it a result of numerous types of injuries? Including introduction of viruses, bacteria, etc?

I'm so glad you were able to have another child. Now that my sons are grown and don't live at home anymore I treasure all the times we had together while they were growing up and treasure any moments we get to spend together in the future. Kids are great.

- McMom

Hi Cristina

I was first diagnosed with RA and Rheumatic fever when I was 14. I went on with this diagnosis until I was 38 and decided to go to my new doctor for a checkup. (I shoud say that I stopped going to a doctor for anything relating to arthritis when I was about 21since nothing was being done. )So I started treating myself. My doctor sent me for tests etc. But going by the results he said that he didn't know what type of arthritis I had but it didn't appear to be RA. He refered me to a Rheumy .Who diagnosed me with AS in about 10 minutes then did all the tests to confirm it. So I didn't get diagnosed until I was 38.



Take care
Valerie

II started feeling pain in my early twenties and then the pain seemed to disappear and then reappear over the next five years. Finally when I reached 29 I knew something was wrong!! It took the next year and about ten X-rays with my Back Doctor to finally diagnose me with AS. I was transferred over to a rheumy and have been on meds ever since. Doing great!!

I can't believe that we would
lie in our graves
Wondering if we had
spent our living days well
I can't believe that we would
lie in our graves
Dreaming of things that we
might have been
-dave matthews

Hi Cristina!

The short story is.

Diagnosed with RA at 20.
Swollen toes and knees. Many years of having joints drained. Swelling continued and 5 knee surgeries up until 1997 until I started taking Cosamin DS.
Supposed RA remission but many painfull symptoms continued into my 30's. Sciatica.
AS diagnosis at about age 30. HLA-B27 pos. fused from SI joints to neck. 48 now.
Can't tolerate any meds. so it's laughter for me.

And still crazy after all these years

peace
Kathy



"The most beautiful stones have been tossed by the wind and washed by the waters and polished to brilliance by life's strongest storms."

I have an interesting diagnosis cycle... and a theory...

17 years old. Chronic back pain. Iritis. Somehow, no one makes the connection. One morning, I woke up with a red and inflamed ankle. I figure I must have twisted it while I slept. My father insisted that I go see a doctor. I poo-pooed this, but he kept after me, and off I went. The doctor drained the ankle, and it turned out I had a gram-negative aseptic infection. Bang, I'm in the hospital. Two weeks of IV anti-biotics. A month or so of oral anti-biotics after that.

I go about my life. Tennis. Bicycling. Gym. Martial arts. You name it. I have back pain, but I figure it comes with the territory. Around 41, it gets so bad that I start going to back clinics. They take X-RAYS and such, but no one makes the diagnosis. However, they send me to a soft tissue guy who was *real* smart. He looks at my X-RAYS and says he thinks I have either DISH or AS.

I go to a rheumie. Boom. Diagnosis. No SI joint left on right side, 80% gone on left. Lower back is fused. Middle back is squaring. HLA-B27 POSITIVE. VIOXX gets me out of the flare.

My *theory* is that the anti-biotics at 17 really slowed the progression of the disease. Dunno for sure, but given my age, and the modest damage done as well as my very early symptoms, it makes sense to me.

FWIW and all that.

Adam Rodman

I feel like I started a whole other life when I was diagnosed about a month ago. I am 38. Compared to what I have read here, I am thankful my symptoms are mild, and like most all of us, I have a very high pain tolerance.

Historically, I have had back since about age 10, when I think I ruptured some discs lifting a fat little girl onto a pony. Does a tough strong ten year old stop to think, hey this kid weighs twice what I weigh? Never got her onto the pony, I collapsed and my legs stopped working for a little while. 17 was a car accident, lost a shoulder ligament, rib something, etc, started years of physical therapy. 25 my leg started dislocating--repaired at 33 by re-attaching the meniscus to the capsule. yay! 35 my spine was injured by an aggressive physical therapist guy, this brought on my first spine MRI, where we saw four ruptured discs with one severely compressing the spinal cord. Major drugs, couldn't walk/move for a couple months, found a great surgeon who gave me back my life. yay! finished grad school. Over these previous years, various aches and pains the doctors call "bursitis" or "tendonitis." Searing hip and leg pain, I called "hip" pain, came and went. They said that's not your hip, it's your saccroilleal joint. There's "something" going on, but nothing showed up on regular x-rays. Pain, pain, physical therapy, I learned to manage my health care and not let them hurt me more. I asked why. It seemed like there must be some genetic component to my predisposition to soft tissue injuries.

This year, I moved which caused me horrible pain. I ate mostly carbs, since meat doesn't appeal to me and I'm extremely allergic to beans/nuts. I started a new high stress job and moved again. More pain. My animals were/are sick and dying for various reasons--cancer, various ailments, we're all getting better now. Family responsibility, no money. . . more stress. . . you get the idea. . . I thought the red, glassy eyes were strange, then the light sensitivity and head pain started. My GP said it was nothing, go home. I lasted four more days until I couldn't read or look anymore or sleep. Went to an eye specialist who did the HLA-B27 test and diagnosed me. I still can't get in to an arthritis specialist--20th on the new patient waiting list! Have to call and write and fight with my insurance to send me to someone else. Dug through my medical records and found my last SI xrays from 1998. Nothing obvious. Here's the good news: after I pulled through and learned from here what my options were, I started a strict NSD. I think I'm better than I have been in years! No more immune cells in my eye and I'm tapering off the steroids now. You see why I don't write often--because I write toooo much, but that's the brief story of my diagnosis at age 38. Ann