Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Test results are in.

Hi Guys,

Just got off the phone with my doctor and my blood tests are back finally. I'm hla-b27 positive. The other two blood tests said that I don't have any inflamation going on. He seems to think I might have osteoarthrits. Thing is I'm having pain in my but not in my hip joint. It's like a really, really, bad cramp. When it's bad I can't even breath let alone move. He wants to have another exray done on my hips. My Dr. is not a rheumy. He's a nurse practitioner. He's really nice but I don't think he knows enough about AS.

If you guys could give me some input I would really appreciate it.
Wendy



Wendy

Wendy,

If you think that you have AS, get a referral to a rheumatologist. Good practitioners know to whom and when to refer.

Best regards,

jcwinnie


Not a medical doctor, nor have I played one on television.

Hi Wendy,

You should definatly see if you can get in and see a Rhumie. General care doctors do not, usually, have nearly as much knowledge of AS as Rhumies, and nurse practicioners usually have even less knowledge on how to diagnose and/or treat AS(Although there are exceptions. My general doctor know more about AS than my Rhumie, and there are nurses out there that know more about AS than doctors, but this is on average).

Inflamation does not necessarily have to be present for a diagnosis of AS, but also, hla-b27 is also not a definative tool. In order to diagnose AS early on, when there is not yet x-ray indications of it, requires a doctor who is very knowledgable in AS to look at your symptoms, family history, test results, and such. And even then it is hard to diagnose. But. . .it is very important to diagnose AS early so that proper treatment can be started to limit damage as much as possible.

If at all possible, try and see a rhumie (at least one, as many are not knowledgable about AS).

I hope that this is of some help.

Take care my friend,

Daniel

http://www.Power-Over-Pain.org

THe usual blood tests for inflammation, ESR(sed rate) OR CRP (C-reactive protein) often are not reliable indicators for inflammation in AS, and normal values for these tests does not rule out AS or other spondyloarthropathies.

Here's a link to a a previous post on ESR and CRP:
https://www.kickas.org/cgi-bin/w3t/showthreaded.pl?Cat=&Board=support1&Number=87063&page=&view=&sb=&o=&vc=1#Post87063

Hi Daniel,

Thank you for responding. I am worried that if I don't get the treatment early that the damage will be worse. My brother was just diagnosed in nov. and had sugery in dec. His back is in the prosess of fusing and I really don't want to be misdiagnosed. Maybe I can see if I can get an apointment with his Rhumy and make the 200 mile treck to where my brother lives to see him.

Thank you again,
Wendy

Wendy

Hi Evelyn,

Thanks so much for the info! What I don't quite understand is if the day I went in to have the blood tests done and I wasn't hardly in pain at all, would it have been a bad day to have had the tests run? Do I need to have the tests run when I'm flairing really bad to have them register right?

Thanks,
Wendy

Wendy

Hi Wendy-
definitely get a rheumy to look at x-rays. My AS started with persistent mild back pain, combined with bouts of horribly painful muscle spasms in my butt and legs, so I could barely walk for several days. I didn't feel the pain in my hips for awhile, maybe years, but the back pain and spasms got more frequent and worse!

Hang in there!

Peace
Linc

Linc O'Brien

I totally agree with Evelyn. ESR is not an indicator for AS. My ESR has never been elevated despite the severity of the disease. During some of my worst flares, that required hospitalization, tests showed normal ESR's. You do NEED to see a rheumy, especially one that specializes in AS. The majority of my fusion had already taken place by the time I was dx.

Keep your head up, and don't give up

Simone

I'd say keep pushing for a diagnosis....if it IS AS, bloodwork more often than not is totally useless.....I have had normal bloodwork, lowSED rate, HLA-B27 negative every time I'm tested and still have lots of AS symptoms...including neck fusion!!!

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

Hi Wendy,

I was diagnosed in 1985, so I can't remember exact details now, but I do remember that my rheumatologist ordered x-rays of my SI joints with x degrees of tilt (can't remember how many degrees). They had me lie on my back and they put something (like a block of wood) under each hip (one at a time) to achieve the desired degree of tilt. Thus I was diagnosed with AS after my first visit to a rheumy. Earlier x-rays of my hips and lumbar spine didn't show anything. The first time I went to a doctor (GP) with what I now know was AS pain, he told me I had osteoarthritis too. I agree with the others that you need to see a rheumy. Good luck.

Connie