Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group How did you know you had AS?

I was DXed early on (in my early 30s) with RA. Then I had quite a few years of back pain, early morning stiffness, heel pain, neck pain, but the back was the worse. Got referred (when I reached the point where standing or walking was agonizing) and he DXed me in about 5 minutes.

Cheryl

If you can't be a good example you'll just have to serve as a horrible warning.
Jennifer Cruisie

Dogs don't want to know about every other dog you've been with

Hi Debbie,

I have had back pain for approx 20 years. Numerous visits to dr.s and was told to take hot shower etc etc. 2 yrs ago the pain moved from my back to my shoulders, hips and knee. Again numerous dr.s visits and no answers. Finally I found a dr. who listened, believed and took action. Imagine that? 2 weeks after my appt. with him he called me at home with my dx based on the HLAB27 + result. A month and a half later his dx was confirmed by a rhuematologist. Once I was given the dx I read up all the information on it and thought yes that is me. It sure sounds to me from your symptoms that you have AS. Maybe you should get a second opinion. Just a suggestion.

Deborah

Hi Debbie,
I don't think your doctor is thinking right. Even though AS doesn't manifest itself later in life, it could have been around alot earlier, but just not as severe as to send you into his office.
This has happened to many of us and come to find out some of us have had it for 20-30 years before we got our diagnosis. Even though we had pain and stiffness, alot of us just though it was due to something else.
I thought it was probably due from my active life style...being on my feet for 9-12 hours a day and doing sports with my kids when I wasn't working.
When I was diagnosed at around 32 my doc said she felt I had it since I was a teenager, which explained alot.
What actually brought me into the doc was back pain which hit so hard that I ended up taking a leave of absence from work for 3 months. It got better and less than a year later I was back in his office with hip pain. He sent me to a rheumy at the hospital which suggested AS, but ruled it out saying woman don't get it, but said there was definitely something wrong, just didn't know what. I then had my doc refer me to a rheumy that friends of mine suggested and she diagnosed AS.
If your brother and father have AS and you have tested positive for the gene, as well as have the symptoms you do, I would say the chances are more than likely that you have AS. You may need to search out another rheumy like many of us have had to do on order to get a correct diagnosis. Finding a good rheumy that knows something about AS is half the battle right there.
Good luck to you.
Lisa

Debbie,

I was diagnosed by a rheumy after 6-8 years of on and off pain. Have a look at keiths link to a new site called progidy.

lee

What would you attempt to do if you knew you would not fail? Dr Robert Schuller

Hi DebbieZ,
I've had a myelogram - I'll pm you and we can chat about it more if you like, or if anyone else is curious I can post the info here. You're right, it's really not a lot of fun, and I would also question whether it's necessary.
Laurie

Sounds like AS to me! I went through 15+ years of hip/upper back/shoulder pain before someone thought to test me for HLA-B27. So I guess I'm late to be diagnosed (46) but that's not exactly my fault! I'd agree with those who've said get another opinion.
Laurie

Hi Laurie,

Thanks for your responses. I went to a neurosurgeon yesterday and he said it doesn't appear to be a spinal cord issue causing the weakness, pain and tingling in my legs and arms. He said it maybe transverse myelitis. It sounds like a pretty serious disease. My symptoms sound similar but not as severe. All very confusing. My regular Doc may want to do another LP since the last one was 2 years ago. No myelogram thank God. Since my LP and VEP 2 years ago were negative the Neurosurgeon doesn't think I even have MS. He was a class a jerk. He started to laugh when I was telling him my symptoms. My symptoms are not a laughing matter. Oh well.

Love, Debbie

The first one to suspect AS in me was my mum. My dad has AS and my sister Crohn's, so I've been closely watched by my parents. When I was 15-16, I had plantar fasciitis. Mum asked the dr if it might be AS/spondyloarthropathy, but the doc said "women don't get AS". Sigh.

Last year of high school I started having lower back pain and morning stiffness. Mum suspected AS and took me to a doctor, who also suspected AS. My parents' RD confirmed the diagnosis.

Nina

It's all that clean, chemical-free living, and a life untroubled by pain or care