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

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.

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.

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.

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:

http://www.spondylitis.org/patient_resources/sg_clearwater.aspx

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:

http://www.humira.com/Global/FinancialHelp/Default.aspx

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!

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