Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group HLA-B27

Thanks Dave - Had the colonoscopy last Jan - that was a check up after removal of secreting tuberavillous adomatous polyps (sounds like the title of a penny dreadful!) Still have gut problems. IBS

Saw the opthalmic surgeon for a check up a couple of weeks ago - he has done a slit lamp. He has been checking me out for a year now. Do have an eye problem, I call it my sloppy eye, which is pretty painful and gritty and sometimes goes scarlet. He opines, blepharitis. Unfortunately he has never seen it at its worst. It has quietened down some but is still rather achey and I can feel it is swollen.

So far three times the HLA-B27 is neg. so suppose the next test will be neg also! However, want to address all and every possibility. My GP is pulling out the stops for me. He is retiring in two months time and I know that he wants to see me through this lot - to get a good understanding of what is happening so that we can get a proper handle on the situation. It's pretty miserable, most of my joints are involved, and we still don't have a definitive dx. (OK join the gang ) But we have high hopes of this new rheumy - lately appointed to consultancy level, young enough to be interested in what is going on and interested enough to pursue it. Seeing her end Jan. Can't wait. she comes highly recommended as well...

So, anything that may be helpful by way of tests my GP is prepared to call for. He can't call for an upper body MRI - only consultants can do that (daft govt. policy!) But we are pulling out all the stops for this one.

Any input appreciated. Thanks Dave.

Molly

well, I'm a pale face from the north.... i'm still HLA-B27 NEG,

I have only been on the no starch diet for a month and I would say that it has helped, but I still have aches and I don't feel ready to exercise yet....but far better than before I started the no starch diet. I don't feel that my medication is good enough either, while blood tests show that I have normal inflamation levels and the doctor doesn't believe that i should have any pain. He seems perplexed that I keep complaining. I almost get the impression he thinks I'm making it up. I want to kick him in the teeth, I refused all pain killers when I broke 3 bones in my wrist so I could drive home and returned to work as a ski instructor after one day of rest. I also walked home after having some floating crap surgically removed from my knee.
I'm honestly perplexed by this, I'm HLA-B27 negative, I have one cousin with Rheumatoid Arth (aside from my achy, but very old and active grandparents). The only thing that has gotten me a diagnosis is the fact that I have so much unexplainable pain.....everywhere and some noticeable bright spots in my pelvis and spine on Bone Scans (inflammation). I have no Rheumatoid factor either. I actually have little back pain. It hurts to touch my hands, knees and feet in very specific places and it has absolutely nothing to do with exercise. I also have cronic shin splints, swollen knees, tendonitis in my elbows and very achy feet. I have terrible dizzy spells in the morning, I have extremely urgent bowel movements and very urgent urination (I have wet my bed 2 in the last two years). I suffer from migraines that make me terribly sick to my stomach. Once I puke I often feel better. I sometimes have all the side effects of the migrain with very little pain in my head. I have had an enlarged left Ventricul in my heart which has caused me some sharp chest pain while exercising. The doctor seems perplexed at my AS, yet unable to say if it is anything else. I'm getting really frustrated because I have spent most of my life as an athelete and now I can't do anything. I need to know what the hell I have and what the hell I can do about it.
Being Diagnosed with AS is helping me, but I'm not 100% positive that this is exactly AS.

Any way thanks every one for your replies....

Kris

my positive hlab27 test finally lead docs on the right path to my diagnosis. My father is positive as well. so is his sister. i have 3 sons. so far my oldest (10) has been tested and is negative .

In May of last year I tested positive for the gene HLA-B27. I had already suspected that it would come back positive. My doctor at the time was shocked. She said she wouldn't have believed I would have tested positive for AS, but my test did come back positive. I have for years had on going back, hip, knees, ankles, and shoulders problems. I am not sure what area doesn't hurt. My ESR on the last test was high at 55.

My two boys I believe will also test positive for the gene, both have back, hip problems and shoulder problems and Irritable Bowel Disease like their mother.

Gerri

Hi, Constance:

Professor Ebringer NEVER said that the NSD/LSD was less effective in non-B27 persons; he HAS said that, although he had not done studies on negatives, he believes that the mechanism is IDENTICAL (in fact he firmly believes that diet will be just as effective in the negative group). If Ebringer has been misquoted, it should not have been on this website without similar protestation; we have total access to the good professor, so can ask him anything anytime and I have offered to go over points of contention with him directly, chapter and verse. The people who decided to call his work 'flawed' have never been able to get up the courage to even LOOK or bother asking Ebringer anything at all.

I don't know where you got his name spelling, but it is characteristic of others who are likewise not very familiar with his work, despite the fact that many of his papers are published on this site.

BTW the B27 test is absolutely definitive when combined with history; it INCLUDES, but a negative result does not exclude. Whoever at UCSF you spoke to is...flawed.

Regards,
John

Hi
Out of my four kids two tested positive, my sister tested postive after i bugged her to have the test, she is in england and had to have a reason to have the test, a blood relative had to have a diagnosis. or she would have had to pay 50GBP, anyways her back is fused in two places. my mum tested negative, my dad is dead but i remember that he suffered terribly from backache. My sis turned out to be positive. my other two siblings have some problems with their knees and back etc but want to wait. I believe that if you suspect that you have this illness, go to another doctor, until you find one that will listen.
i had been to trillions until i found a brilliant doctor, who had worked at the mayo clinic, he told me that alot of the time women especially go misdiagnosed with other illnesses because AS not suspected in them because they are FEMALE. I suffered for 7 years chronically with this illness, overall 21 years since i was 15 before i got a diagnosis.
Maybe the people who test negative for AS have acquired the disease not genetically but from another source,

a few people whom i have spoken to noticed symptoms since an early age in their teens have all tested postive,
ps none of my esr RF foretold that i was going to be positive for the HLA 27B i was not the norm either but i knew their was something wrong so to all out there who are battling with this change your doc until you find one who listens. no you are not crazy or a wimp this disease is aweful painful but there is a doc out there who will treat it and listen to you:)

Somewhere here there is a post where it showed that Australia has withdrawn it's HLA-B27 positive requirement for diagnosis. Some other countries I believe are considering it as well. Your race can also interfere with this being positive....so take some info. in with you.

Earthbound,

Even if you are positive for HLA B27, it doesn't mean you will ever get AS. Only about 10% of the people with a positive for HLA B27 get AS, and there are many people, usually caucasians that are negative for HLA B27, but still have AS or one of the other Spondies.

Hope this helps,

Gay