Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group would you mind?

I'm B27 neg and am seeing my rheumatologist soon. At our last meeting, he said 'I'll send you for the B27 test and if it's negative, you've definitely not got AS'. How he's going to explain the heel pain, knee pain, hips, lower back and flu symtoms should be interesting but it struck me that if I had some testimonies from 27- s then I might offer these. So, if you're willing to write a short note declaring how long you've had AS, EVIDENCE that you've got it and a possible email? (he'd never write to you but it'd be good just in case he thinks I've written them myself!) this would be a great help.

many thanks

Billy

Suggestion - using the "search forum" utility, search the forums for those on here who are HLA B27 negative AND have been diagnosed with AS. Print these out and take them along to your rheumy. I find it a little shallow that he is using the HLA test as a be all/end all marker of wether you have AS or not. At least if you let him know that certain ASers are HLA B27 negative, it may open his mind a little.

As I've found in the few years I've been diagnosed with AS, the specialists dont (and cant to be honest) know everything about AS. It always helps to look up the info yourself and assist him, if he's a good rheumy he will listen to you.

Good luck, hope you find a diagnosis soon.

Daz

I am negative, but I would have to do a little searching to find anything paper-wise to show what You're looking for.

Personally, it took over ten years, an ortho, a rheumy, an infectious diseases doc, and a half dozen GP's to finally get a tentative SpA diagnosis for me, and rheumy said she was pretty sure it was AS despite the neg B27, but didn't record it as such for insurance reasons.

The negative B27 is a concern of mine too, so I will see what I can find for you...

Chelle

Billy

Check this out.

John

Click Here

John, edited to shorten the link, Ian

Edited by iwood51 on 11/01/04 08:38 AM (server time).

Let me see if I can get this "link thing" down. If not, I will pm or email you.

http://www.vh.org/adult/provider/familymedicine/FPHandbook/Chapter07/05-7.html

print out the whole thing, and have your doc read down to "Lab tests" under "diagnosis"

Billy,

get your rheummy to be specific in what they are saying ie You do n;t have AS but another SpA or you have FM or a pain syndrome or something else.

B27 -ves do get AS and SpA.......

23 years now, diagnosed 2003, neck SI and peripherals usually disc damage........knees ankles and feet ie peripheral as well as axial. I've only had light temp fusion so fat AC joint and left SI.

PM me I'll mail you some abstracts


Best of Luck

David


IBD=It's Been Dreadful

I am Negitive-- Went un dx for many years because of it. Don't wait until you are fused like myself to get the proper dx.

Billy,

I am B27 negative. I and others would attest that one can have a negative test result and have ankylosing spondylitis. Nevertheless, we are a small minority, i.e. 5-10% of people with AS.

Quoting from online information provided by The Arthritis Society of Canada:

The HLA-B27 tissue type, while not causing AS, does predispose individuals with the B27 tissue type to developing AS. Thus, we see AS tending to occur in families. Having the tissue type itself does not mean you will get AS, it simply increases the possibility.

And, this, according to the Merck Manual, Sec. 5, Ch. 51, Arthritis Associated With Spondylitis:

A positive test for HLA-B27 is usual but not invariable and not specific. (A negative test is more useful in helping to exclude AS than a positive test is in diagnosing it) (My emphasis). This test is not necessary in patients with typical disease [confirmed by X-ray].

The following PubMed abstract will provide more specific info:
Susceptibility to ankylosing spondylitis in HLA-B27 negative patients. You then may want to click the very nice, PubMed feature: Related Articles, to see if there are newer articles on this topic.

Having said all that, given the symptoms you have listed I could understand a physician's reluctance to diagnosed you with Ankylosing Spondylitis.

Best regards,

jcwinnie

negative here also,
rummy gave me the diagnosis when he looked at my mri and xrays, and did not use the
gene b27 to determine that i have AS, although he performed the test.
good luck to you and hope you find a good rummy that will treat you and not just shrug off your complaints.
my first symptoms that i recognized as pains other than growing pains, as my mother explained them,were at the age of fifty-two. my eyes took a crap and was diagnosed with iritis and uvitis along with vasculatis of the eyes. sent to many specialists at the cleveland clinic until my hearing went out due to shingles on the eighth cranial nerve. at this point i went to a different rummy at the cleveland clinic and he looked at me and my records came into the room and said you have AS. he then sent me to university to confirm the diagnosis.
it was confirmed and the treatment started. he didn't seem concenred about the fact that i did
not have the gene. i have been on imuran(used instead of methotrexate because of past liver
damage caused by hepititis b as an adolesent., for three years. enbril for a year and finally
remicade for a year. no relief has been found with these biologocal drugs. the remicade has destroyed my nervous system by causing demylenting. my neorologist has been treating me
for this nerve damage, but has not been successful as of yet.
i am on neorontin, tylenol 3, indocin currently, and have to see more of the noerologist in the near future.
hope this post helps you to get the help that you need and deserve.

good luck to you my friend
john
jfheff7@highstream.net

My rheumatologist dx'd my AS on the strength of a radioactive style bone scan, he only went for the HLA B27 test because I asked out of curiosity at a later date - it turned out to be negative.

For the bone scan, instead of firing radio active x-rays at you, they make you radioactive (well, your blood anyway) and scan for where the blood is gathering in greater amounts than usual - indicating inflammation. In me it showed bi-lateral sacroilitis (meaning both my left and right sacro-illiac joints were inflammed, which is one of the diagnostic criteria for AS).

     Loz



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