Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Canadians?

Just off the top of my head, I would say DR4 is one. Others that are relating to possible causes of uveitis. Have emailed her for more info, but no reply yet. I can look up the specific HLA markers which are associated with uveitis, if that would help.

Thanks for you offer of checking things out!!

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Kristin

(bump)

Thanks John! How you been???

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Kristin

K:

Another thing I was just thinking of is your friend's location ... does he/she have access to a major centre, or is he/she in a rural area. That might change the availability of the testing significantly.

Jeanna

PS - pretty sure that DR4 is something they do fairly often. I'll check tomorrow.

MADE IN CANADA

Kristin:

I'm doing much better now, thanks. Hope all is well with you, too.

John

Hey J,
They don't do the HLA tests here but send them to Montreal. It takes about 1 week for results to come back. Being in a town so far away from any city doesn't make it worthwhile I guess.
Take care,
mars

Hi Jeanna,

You're tooooo great! I think one test she was interested in was IgA deficiency test because she has allergies. Any info appreciated.

Just did a search for this and found a lot of weird conflicting info. HLA-DQ3 was mentioned a couple times. Confused!

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Kristin

I had my family doctor do the HLA test with no difficulty. I told her that my sister was HLA B27 positive, diagnosed with AS, and asked her to do the test, and I am positive for HLA B27 too. That led to the diagnosis of AS. I am in Ontario.

I asked my old doctor to do it and he refused, saying it was very rare and I did not have AS. I think it is a matter of the attitude of your doctor. My old doctor was old, and he had a 1950s attitude towards women. "There there, dear. It's all in your mind. You know how hysterical women can be." He did not outright say that, but that was the general message. I think another part of the problem is the rarity of AS. It is so rare that I think doctors do not expect to see it and rule it out in their minds just because it is so rare.

I had to grit my teeth and bear the pain and inflammation with no drugs, not even NSAIDs, which is bad because inflammation does damage to the joints. I stood it as best I could for a few years. It got to the point where I felt I needed a handicap parking pass (my knees were so bad it was agony to stand or try to walk anywhere, and the NSAIDs take care of that for me), and he refused to fill in the paperwork for a handicap parking pass, insisting that it was just a little OA and I couldn't possibly be in that much pain. That was it for me. There was a new doctor in town, and I thought I would make the change while I could find another doctor who was taking new patients. It was the best move I could have made. My new doctor is wonderful and on the ball.

My new doctor is female, and she has none of that patronizing attitude towards women that I disliked so much in my last doctor. She treats with with dignity and respect, and was willing to honour my request. I could tell she was surprised by the result, again the rarity of the gene, and not everyone who has the gene goes on to develop AS, so AS is even more rare than the gene. (Only 6% of the population has HLA B27.)

To be fair, my old doctor was a kind man and very good with my children, willing to take the time to talk and explain things. I don't want to completely put him down, because everyone has their good and bad points. He was also the only doctor in town willing to take new patients when we moved here. He was busy, but said he would not turn us away. He was wrong about me though, and I was right to change. I did feel bad about it at the time though.

Keep pushing for the test!! If you think it will help, print out some of these responses and take them to your doctor.

Val.

I was tested twice both came out neg but no problem getting tested in Ottawa.

John

Hi Kristin,

I'm in Toronto ON and tested + in 1983. My Dr. ordered the test automatically (without my knowledge), after diagnosing me with AS.

He said at the time, he would not test my siblings (unless they were showing symptoms) since they may test + but would likely never develope AS. Reasoning that therefore it would only serve to waste healthcare $$ and cause unneccessary concern.

My brother was diagnosed with RA, (triggered?) after a heart attack - and (I believe) tested + for HLA B27, about 10yrs later.

mig