#160933 - 11/05/09 03:31 PM
Re: Age when you were diagnosed?
[Re: Ashiegirl]
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Imparero
Registered Visitor
Registered: 11/05/09
Posts: 4
Loc: Connecticut
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I was just diagnosed (20), though I've been pushing for some kind of action for years. It's about time! I have had really terrible pain since I was 14, and over the past couple years it's escalated to include severe fatigue and a variety of other symptoms, espcially having to do with the nervous system. The ball is finally getting rolling, and I've talked to my doctor about ankylosing spondylitis for a couple years.
No doctor seems to want to take me seriously, even though I'm a premed student. It probably does have to do with being a woman - we go to doctors more readily than men, and doctors of both genders probably see more women about nothing.
My problem also had to do with being a student. They didn't hear "fatigue" when I was in High School, they heard "tired", and they didn't hear it now that I'm in college either, they hear "worn out". They dismiss me because, being in college, they assume that it's from late nights and stressful classes. What finally made them realize something was actually going on was when I persued a large handful of doctors to find out what was going on. I have seen a couple neurologists, a rheumatologist, an endocrinologist, had several MRIs (progressively less "nothings"), a sleep specialist... "Sounds like something's going on with you" finally came when I said I have daily headaches and get so dizzy/pained that I cannot hold my pen - I'm an artist. This is important.
Ah, well.
_________________________
Diagnosed with AS October 2009, suffered since 2004. Awaiting treatment.
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#160949 - 11/05/09 05:33 PM
Re: Age when you were diagnosed?
[Re: Imparero]
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Magnolia
Registered Visitor
Registered: 01/29/09
Posts: 7
Loc: Washington
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I was diagnosed with spondyloarthropathy 3 years ago at age 26, by ct scan which showed bilateral si joint erosions. This was 6 months after birth of my second child. I had terrible low back pain during pregnancy, which only increased after he was born. I'm hlab27 neg, and don't show any ablnormalities on x-ray or mri. However, have a great rheumatologist who started me on tnf blockers early, after just a short trial of various nsaids and sulfasalazine. Tried enbrel first, and disappointingly had no response after 8 months. Was then switched to Remicade, and was almost pain-free by the 4th infusion. It is still working pretty well after 18 months, although I've had to increase dose and frequency.
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#162174 - 11/23/09 11:42 AM
Re: Age when you were diagnosed?
[Re: __Roblindy1__]
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ReMeFaSoLaTeDa
Registered Visitor
Registered: 01/03/09
Posts: 5
Loc: Seattle, WA
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First major flare in 1997 at the age of 22. I experienced a severe and dramatic onset for about six months tapering off over the next two years and then infrequent but severe flares after that. Have been able to backback, hike, run marathons, and travel extensively in between flares. My initial flare was accompanied by excessive blood in my stools. I paid for a colonoscopy on my credit card but they couldn't find anything (tried to prescribe anti-depressants as if that would stop the bleeding! HA!) Haven't had any IBD problems since initial flare. Different doctors told me my SI pain was stress, residual pain from a car accident I was in when I was 17, my backpack, depression, "normal".
I was a waitress in college and had to hobble around to my classes during the day and my tables at night. Self-medicated with booze for years because you don't need health insurance for that! I saw a chiropracter for years because I dind't have health insurance and he saw patients on a cash sliding scale and I could pay with my tips! I really thought it helped, but looking back, it might have been all the icing and massage he did that helped and not the adjustments. I was finally diagnosed when I was 32 after I had a really horrible flare of uveitis. Ironically, it was a Walmart optometrist that first wrote down "HLA B27" on a piece of paper and told me to get tested. I was traveling in a remote area during my first uveitis flare and he was the only person I could get to see me. He treated the uveitis, sent me to an opthamologist and told me to see a Rheumatologist. At first my GP dismissed my desire to see a rheumatologist and said, "You'd be in a lot more pain if you had a problem like that." HELLO? I was bed-ridden for weeks as a 22 year old, how much more pain does one need to have? As a 32 year old I was a better advocate for my own health and found a new GP who referred me to an excellent Rheumy who really gets it.
It's sad that it took over ten years to get a diagnosis and that no one would believe me until a large amount of damage was done to my SI joints and visible on the scans. I think that the medical establishment is hostile toward women - my sister has been having a nightmare figuring out what is wrong with her (I think it's Fibro and something else - you think with my history they would listen to her, but NO!). Every time I read that A.S. is more common in men than women I bristle. My rheumy, and a lot of others, believe that it is just underdiagnosed in women - not less common.
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#162812 - 12/06/09 06:18 AM
Re: Age when you were diagnosed?
[Re: Ashiegirl]
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balletfan213
Registered Visitor
Registered: 12/06/09
Posts: 3
Loc: New Jersey
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36 - and I'm 36 now.
Of interest? My great grandfather was a 'Rieter's Syndrome' French World War 1 vet - was actually sent home from Verdun to Marseille at 19. They thought it was a Men's Only disease as did he. Except right before my Grandmother's 36th birthday (He came to the US after WWI) - she developed all of the symptoms of what he had. He came to 'treat her' and stayed with my mom's family during her first flair.
So my first true 'flair'? I walked into a glass wall in a Chase Manhattan a week before my 36th birthday (february 7). I used to be a ballet dancer so I had chalked up my previous few years of aches and pains to the abuse ballerinas put on their bodies. Except after my accident - my body started to 'shut down'. Tons of swelling in all of my joints. My birthday I went to my annual doctors/dentist/eye doc appointments - came home at 1:00 p.m. - and slept for 5 hours. Go out with my girlfriends for birthday - proceed to spend the whole weekend in bed and my body was just on fire.
My GP directed me to my Rheumy and a Hematologist/Oncologist - she thought it a Lymphatic disease. Eh - no? HLA-B27 and R.A. factor along with high white blood cell count. Officially diagnosed in early April of this year.
My Rheumatologist is a wonderful wonderful doctor. When I had my initial visit with him he only ordered four test. I was literally walking out of his office when he stopped me and put one more test on my blood work form - that was for the gene. He even said it was a long shot.
Go figure. His instincts said - she's got 'this' and tested me for it. I go back in to get the diagnosis and he says: Forget what you are going to read online about this being a men's only disease. Less women then men - but it's possible.
_________________________
Huge Motley Crue fan. Who'da thunk I'd develop the same condition as Mick Mars?
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#167031 - 02/05/10 03:32 PM
Re: Age when you were diagnosed?
[Re: Ashiegirl]
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Sarahbgood
Registered Visitor
Registered: 01/07/10
Posts: 51
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Diagnosed at 33, July 09 after about 8 years of pain. Started having lower back pain when I was around 25. I thought it was just because I sat at a desk all day. The pain started waking me up more and more and I started seeing a chiropractor because my dad did--he had always had back pain and did not know what it was and always saw chiropractors. His chiro caught his about 5 years ago and he went to a rheumy and was diagnosed at 55. He is now on Humira.
Over the years I had MRI's, X-rays, saw orthopedic surgeon, saw one rheumy that said I just needed to lose weight. I have had physical therapy and been to a couple of different chiros (wish I would have known not to do that). Had my son in 06 and the pain just got worse and worse. I haven't had a nights sleep in the last 8 years where the pain didn't wake me. I am always stiff and sore in the morning.
I was also diagnosed with IBS years ago--interesting that it is related or so they say. I haven't played around with my diet a lot but do notice if I eat too many starches it affects my bowels (sorry, TMI!).
Goal now is to get on Humira and hope it works without side affects. Then hopefully get some sleep and see if I can get some extra weight off my frame.
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#167164 - 02/07/10 12:01 PM
Re: Age when you were diagnosed?
[Re: Missy]
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avonldy
Registered Visitor
Registered: 12/14/09
Posts: 810
Loc: N. Sacramento Valley
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I guess I win the Booby prize for being the oldest. I was 69 when I got my DX. I have had tendinitis, bursitis, a bad back, two knee replacements. Ostio, costochondritis, and just about every thing else since I was 19. I figure it took 50 years to get a DX. I get to see a new Rheumy next month. Now that I have x-rays that show damage to my lower back and sacroiliac, I hope he agrees with my GP and does something to help. I am so tired of taking pain pills. I guess I am blessed to have a GP who will give scripts for pain meds when needed.
Donna
_________________________
Suffering since a teenager.Dx with AS Dec 2009. Dx with ulcerative colitis 1998, both knees replaced 2006. GP said I had "some kind of inflammatory arthritis" 25 years ago. It has taken 50 years to get a Dx.
Taking Humira starting June 2, 2010.
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#167197 - 02/07/10 07:34 PM
Re: Age when you were diagnosed?
[Re: Ashiegirl]
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jackieb
Registered Visitor
Registered: 04/16/07
Posts: 1544
Loc: Saltville
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I was 36 but had pain since highschool. Went do a very knowlegable dr who sent me for PT and working with them they DX me with AS.
_________________________
Jackie
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