Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group are there any drs that really rock?

It seems like every other disease has a clinic where everyone knows what to do and stuff. Are there any experts on AS? Is there a good area to live in, where there are more knowledgable drs?

I can tell you Kansas is not it.

I posted a few times almost a year ago--I am 25 and the fusion is now showing up on x-rays so i am vindicated hahahahahaha! Still, no help... I saw a rheumy on a list I got from the SAA, and he was too stupid to breathe. He told me he didn't think I had anything wrong with my spine and that I had--you guessed it, what they tell every woman in pain--fibromyalgia! This after he did not and would not examine my spine. He did do x-rays, though, and my SI joint is showing fusion so ha! Now I have to have a ct scan--you know, because he isn't wrong, the x-ray is. I'm only going to see him this one time to get results and stuff because he is not good--interrupts and doesn't listen. If he had he would have known about my stiffness but he didn't hear me any time I said that. Selective hearing. And my pain dr's PA will not give me enough meds because i "am young and will get a tolerance too early". And this is not the same one I was seeing last time I was here, and the rheumy is different to. I just can't find anyone worth it. Even though she knows this hurts so much and she has a friend with it who has more pain meds than cancer patients blah blah blah, and she seems sympathetic, but she is a wuss just like the rest of them. I haven't been able to take classes for a year and I can't even get to church or the store anymore.

So I was wondering if there is a group of drs somewhere who are really into this and studying it and helping patients. I doubt it; the Johns Hopkins arthrits website says it is a "low-priority research project". I think I am worse off than I was before when I came here. I'm really losing my spunk and zip.

--Heather

Hi Heather!

I love the humor you wrote your story with, but I'm sorry it didn't get better. I have been living the same story...while I don't have SI fusion (yet?) I do have fusion in other places which I have been told by MORE than one doc that it's typical of Juvenile AS.....BUT.....it's congenital, you know too

I'm also fed up with the medical profession. I have also been told I'm TOO YOUNG to have my pain controlled. (I'm 27). Isn't this nonsense??? Even with myback a mess, i was told I COULD have Fibro...though the doctor herself didn't tell me, her *NURSE* told me that. Does that count?

I wish I could put all of us here in a box and shake our AS, our un-diagnosed AS, our not-diagnosed AS, and our re-diagnosed AS outta us. I wish I could send all of us to a fabulous doctor...maybe by Priority mail ...and have us back in our own state (yes, *state*) in no time.

I don't have any advice but I'm there with you!

Rox
http://www.geocities.com/artisan1998.geo/index.html

I had the idiot doctor from hell in the beginning. When the pain of AS started and I could barely move, I went in and she told me I pinched a nerve. A month later when I had finally managed to get around taking baby steps, she still told me it was a pinched nerve. I finally asked for a second opinon at which time she finally sent me for x-rays and did blood work. I hadn't heard anything about my blood tests so I called them. Their answer was that they found something but they didn't know what it was. That was a real comforting thought. They told me I had to come in, so I did. The doctor told me what it was, pretty neat that they had a picture of it on the wall. When I asked what it would do she got her medical book out and started reading to me! At that point I knew I her name should have been Dr. Quack. She told me it would never have any effect on any part of my body besides my back, it was very minor and I didn't have much to worry about. I went home and looked AS up on the internet and balled my brains out for 2 hours. At the 1st of the month (gotta love HMOs ick) I switched doctors. My new doctor is the most wonderful man in the world. He is completely responsible for the improvements I've made, even though the improvements aren't that great. He sent me to a very well know rheumatologist who fits into the wonderful catagory as well...though he has the personality of a brick. The only thing that makes me mad about both of them is that they refuse to give me any type of pain medication. I hope you get things worked out!

Amanda