Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Rheumy Halifax, N.S. ?

OK. So my first rheumy apt. was a disaster. I have licked my wound and am ready to start again. If I give up, well, if I'd like to feel better. I walked away for too many years already. That is what has gotten me here. So I am ready to tackle this again. One opinion, that is all it was. I am seeking a rheumy in Halifax N.S. who is familiar with AS.

I have gotten my old GP chart. I have contacted the hospital where my records from the study are. I can have access to them.

My plan (wide open to suggestions) is to collect the data, review it myself and then contact my GP. I'd like a rheumy that is familiar with long term progression of AS. Any advice on what I should do would be fantastic.

Thanks

Shel

Shel: It sounds like you are doing all the right things by gathering your medical documentation and finding a new Rheumy. You may want to get the records to your new Rheumy before you see him or her so they have a chance to put the pieces of the puzzle together. Also, it helped me to have a pain diary, which I gave to the doc.

I think I mentioned to you before, I had a negative experience with a new grad Rheumy when I was getting a second opinion. She told me I didn't have AS and that only men get it. As much as I wanted to believe, I knew with my family history with AS, HLA B27 positive, SI inflammation on x-ray, degeneration of spine - and chronic pain and stiffness, that Rheumy number 2 was wrong. Rheumy number 1 just laughed when I told him what happened and I stayed with him until he retired.

I have had two Rheumatologists in the past 10 years. I can't say they have had a lot of AS patients but I am happy with my care.

You will find a good doc. You just have to keep up the hard work .

Keep us posted!

Shari

I've been trying to find stuff on the internet about what AS looks like in people diagnosed very late. In particular I'd like to find something that looks at how you can differentiate between primary degenerative disease (osteoarthritis and discs) and degeneration that is secondary to untreated inflammatory arthritis. I think it is too easy for rheumatologists to ignore history (which they have not recorded themselves) and just see age-related degeneration, even if it is worse than would usually be expected at that age.

I've also been trying to find out more about atypical AS, or how AS differs in (some) women from the classical descriptions of male AS. There is quite a lot of casual comment about how the progression in women can be different than in men, and how the disease can be less serious in women. To me that all falls down though when you actually see quite serious consequences of what looks like AS or other spondy disorder in women over 50, but who might not have bothered to go to doctors or might not have been diagnosed when they first developed symptoms. Delayed diagnosis of up to 10 years seems quite common in men. I'm really wondering if some women don't show enough to be diagnosed for more like 30 years from first symptoms.

Anyway, gather your evidence, and if there is anything that states clearly that you were properly diagnosed way back then, pull that out and make sure your new doctor sees it.