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I know I have AS..docs here either don't know it or arent interested because I can still walk.

By Anonymous March 25, 2010 - 6:30am
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I live in Florida, where good docs are at a premium. I have had these symptoms since I was 19 or so. It was a slow progression, so I pretty much ignored it until about 10 years ago. My hips cracked and hurt, my neck clicked and was stiff and hurt. I had two bone scans that showed a lot of inflammation...yet nothing else was done. Xrays. NSAIDS. They just gave up, thinking I was drug-seeking or something. I never got any. But here's the thing. I have two children, I am 43 and now it's horrible. I cant keep up with them or the housework, I get exhausted and weak and can't do much. I feel old, whereas I was always active before. I walked everywhere. I am not overweight. Why has no one ever cared enough to help me? Now, after trying many docs, I gave up. It's bad now, and I have no insurance. I do not want to see myself in a wheelchair with my girls. I will kill before I do that. All the docs said oh you are the wrong sex, too young (!), are Hbl27 (whatever its called) negative. It's not Lupus, RA or anything else. It's just some sort of arthritis (even tho I am not getting plantar fasciitis and achilles tendinitis). This is extremely frustrating to me. How do I get a doc to listen???

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Hi Anon,
I have ankylosing spondylitis. I was diagnosed when I was 50 but had been ill for quite awhile before I was diagnosed. I am now 58 and my disease has progressed to the point where I had to go on disability. Its rough and I understand how frustrating it can be to get the help you need. Utilize the support group as they will understand what you are going through. Sometimes it takes awhile to get diagnosed as with all autimmune diseases. The support group will help you so much. I hope you followup and get involved.

November 6, 2011 - 3:01pm
EmpowHER Guest

I will tell you as woman 33 years old, I got diagnosed with Ankylosing Spondylitis by my PCP only 2 years ago, when I started having severe back (SI joint) pain when I was 11. It would come and go, and I was a waitress. It continued to get worse, I would literally not be able to walk some mornings. I would CRAWL to my kids bedroom (this is at 30 sometimes) Lifting my leg was EXCRUCIATING pain, I was in such extreme pain all the time. I was on medicade and the docs there are few and far between, to say the least. I was seen by a doc at a "low income" doctors office, she told me that I was just a "tired and over-worked mom" . She would prescribe me medication, but then wanted me to seek physical therapy. I couldn't afford it, so years later after dealing with a ton of pain, I got a physician, sent to me (I believe from God) to help me. He diagnosed me with AS and I got steroid shots in my SI joints. I cannot tell you how much it helped. Unfortunately, the inflammation has moved to my neck now, I will say, it is not NEARLY as painful, but equally annoying. They seem like they don't believe a younger woman in back pain. I am not a drug seeker nor have I been on any narcotic medication for any length of time, but I have been to the ER several times due to complications from this disease. I am sorry to here your situation, ask them for further testing.

February 3, 2011 - 8:48pm
EmpowHER Guest

It can be hard to go to another (and another) doctor when you have had bad experiences but you must find another one and try to give a concise description of your problems to a rheumatologist. There are clinics, call your country to find out where it is. Have copies of your bone scans to show the problem and keep costs down.

The really good medications offer financial help so don't give up. The links to SAA are excellent, go there.

May 11, 2010 - 4:52am
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Anonymous (reply to Anonymous)

Don't give up!! I started having symptoms when I was 5yrs old and until I was 19yrs old they had NO idea what it was. I went to so many hospitals drs an specialists before finally finding a dr who did xrays and said ah ha it's AS! I'm very lucky my parents believed me and that they never gave up on taking me to dr after dr yo get answers and I thank them all the time for that. It's easier to fight for it if it's your children but remember you have to fight for this so you can be functional for your children. Hang in there and just keep pushing forward. Even if you say to the dr I'm not leaving your office until you give me a correct diagnosis. Be firm, be tough, demand the best because you deserve it. If you do not have insurance look around and call ask dr offices if they have a sliding scale for self pay. Many do.

Best of luck

May 17, 2010 - 1:47am

To the Anon from Clearwater who originally wrote this question: I wanted to be sure you get the Clearwater support group information. They met in March and have not updated the site yet with an April meeting date, but there is a phone number you can call:


And to the Anon who just wrote about her experience on April 1, thank you so much for chiming in, and for the information about Humira. If anyone out there needs financial help with Humira, here is their page on people who qualify:


April 2, 2010 - 9:27am
EmpowHER Guest

I know recently doctors have found multiple genetic mutations that can cause Spondylitis. They currently don't have these other genetic tests available to the public due to costs. But perhaps you need to try a rheumatologist. I have the same type of symptoms (as well as an underlying autoimmue disease of the eye that is commomly connected with Spondylitis) and although I was HBLA27 negative I was able to get help using Humira. I see a big difference in my ability to function. So don't give up. I also know Humira has assistance plans to help people who cannot afford the meds. Hope you find help!

April 1, 2010 - 10:29am
HERWriter Guide

Anon - You are among many, many people who are having difficulty right now due to insurance issues that are compounded by the high unemployment rates. Although it can be difficult, and may take a lot of time and effort and even some battles, there are resources out there to help people with funding to cover prescription drugs that have become unaffordable. Diane has provided information about support groups. Patient organizations are often the best resource for information on prescription assistance programs, good doctors, resources, and more because they've helped others in the same situation that you're in. I encourage you to turn to the Spondylitis Association for support, and wish you the very best. You just can't let others get you down. Take care, Pat

March 29, 2010 - 6:04pm
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Anonymous (reply to Pat Elliott)

Thank you, Pat. it's just hard...i cant get Medicaid because my hubby is still barely on unemployment; you know the deal. Let's hope once he loses it for good I can hop on the net and apply again. thanks for your kind words...I guess I never realised how hard it was out there, I mean I was aware of course, but it just doesnt seem right. thanks

March 29, 2010 - 6:32pm
HERWriter Guide (reply to Anonymous)

Anon - It's VERY hard, but I want to encourage you. Just doing the research and finding the right support takes time, and you can start on that now, whether you have insurance or not. Not every assistance program is online. Not every program makes you wait. Please don't give up on yourself. No, it's not right. Yes, it's very hard. But you and your family deserve more than you have right now, and you're worth the effort and the more you know the more you can do. I wish you the best.

March 29, 2010 - 6:49pm
EmpowHER Guest
Anonymous (reply to Pat Elliott)

Thank you very much!

March 30, 2010 - 6:23am
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