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

Hi there folks.

Ten years ago at the ripe old age of 35 and while acting the young boy, doing circuits in the Gym, I managed to do the lower back in.

After a lot of hoking and poking and examinations by every type of Doctor imaginable it transpired that I had prolapsed discs in the area of L4/5 and S1. This only came to light as a result of a CAT scan and MRI scan some 18 months after the injury occurred.

I was being fobbed off by the doctors and passed about from pillar to post (in a lot of pain) and it wasn't until I had an X-ray of my lower back (7 years later) that I discovered I had inflamation of the sacroiliac joint.

On my return to the consultant a few weeks later he informed me I had AS. He then went on to tell me that my spine was going to fuse I could have problems with my eyes, lungs and on the rare occassion the heart. I sat there, listened and then asked him if there was any good news to which he replied, "No, but I will arrange for you to see a Rheumatologist."

Well I left the doctors that day in a state of shock but I have now come to terms with the condition and take my pain and tablets every day.

What really vexes me is that, prior to injuring my back I had no real problems and led a very active life. When I initially attended hospital immediately after the injury my lower back was X-rayed but showed no signs of inflamation, I have even had a HLB27 test(after diagonises) done but it came back as negative, so what I was wondering HOW did this start, what kickstarted the whole thing off.

Is there anyone out there who can give me an answer, cause the doctors can't.



Thaks Ken

Hi Ken!

Boy, that is a big question, and one I don't think anyone can answer with certainty. There is still a lot that is not known about this disease, but there are a lot of theories out there. However, it is important to remember that they are only theories and remain unproven by research at this time.

There appears to be a genetic link. HLA-B27 is one gene involved, but probably not the only gene. There is some thought that HLA-B27 acts in concert with other genes to predispose one to get AS, but not everyone with this gene gets AS, and some people with AS do not have HLA-B27. It would appear that it takes some genetic combination plus a trigger to start the disease going. Maybe it is some other gene that really causes it, and HLA-B27 is the trigger gene. Who knows? I don't, and unfortunately medicine cannot yet provide these answers. Because AS is rare, it has not received the research attention and dollars that other illnesses have such as Rheumatoid Arthritis or Lupus. The trigger could be injury, or some viral or bacterial infection. The truth is there appears to be a connection, a lot of anecdotal evidence, but not a lot of empirical evidence obtained through research yet. Some people believe it is connected to diet. I don't want to knock those who swear by the no starch diet, but I have tried that and during that period my AS was at its worst. If you want more information on that, there is a NSD forum here to find more information.

In my own case, I had mild symptoms going back to my teens, but nothing serious enough to cause me a lot of pain or really slow me down. After a slip and fall on ice where I twisted my knee and tore ligaments, my AS jumped into high gear and I had a very bad four years. It would make sense to me that stress, which can be caused by injury, would be related since stress directly impacts on the immune system, and this is an autoimmune disease.

I'd like to see what others think and I will follow this link with interest.

Welcome! I look forward to your future posts.

Val.

I'm still new to this disease but I have to also think that an injury started my symptoms. 3 weeks after I broke my big toe (first broken bone or serious injury for me) the symptoms first occurred. 6 months later I was diagnosed with AS (which does run in my family) and I am HLA-B27 positive. So I don't know if the broken toe caused my symptoms or whether it was just a coincidence. Makes you think doesn't it!

Kym Banting

I don't know why my AS started either.I am 56 years old.I went to the service when I was 20.I was wounded in Viet NAm.When I returned I had surgery to remove shrapnel.A year later I started having symtoms that were diadnosed 18 years later as AS. I haven't been tested for the gene but the Doctors are quite sure it is AS.I probably would test negative anyway as there is no family history of AS.The VA just recently admitted that injury can trigger AS.We must be prepositioned to get it.I'm still doing a lot of research on AS.Until I got my last Rheumy I have known more than the docs I have had.
Anyway Welcome to Kick AS you will get a lot of support and information.This is a great bunch of people.
Jim

Welcome to KickAS

Stay around to know better about this disease, check out around the corner, you will find some answers.

Sinta

Well, it makes sense, since AS is an autoimmune disease, that an injury or illness could jump start it. I first had symptoms when I was 26 when I was pregnant with my son, lots of lower back pain, and then lots of back labor The baby was born, the pain stayed. It came and went for the first few years, never went to the doc about it, and then it came and more or less stayed. I was DXed when I was in my early 30s with RA, mainly because my left ankle (peripheral joint involvement) started to swell and ache, but no one paid any attention to my whinings about how much my back hurt. Of course in those days women didn't get AS Then over time it was my ribs, fingers, toes, right knee, and finally two years ago I was DXed with AS. I have had some eye involvement - - red, gritty dry eyes - - and up until about a year ago the back pain had reached a stage where a cane became a necessary fashion accessory. I went on Arava last October and it changed my life, my eyes are fine now, or usually anyway, and the cane is only used when I have overdone something.

Cheryl

Dogs don't care if the house is messy

I'll join Kym and Val and jump on the induced-by-trauma bandwagon.

I'm sure there are papers out there on it, but honestly, I havent searched for them. My idea is this - for a long time your body's trucking along, immune system working like it should. Then suddenly, something triggers that autoimmune reaction. Lots of folks think its an infection ... but is that the only option? Val makes a terrific point. When your body gets injured, your immune system gets mobilized, not just because of stress, but because inflammation is a part of the healing process (hard to believe it actually has a useful function huh?)

Personally, I had a fall when I was 12. A month later I was in the hospital with back pain focused around my right hip. I was in the hospital off and on for four months, and when I went to school went in a wheelchair (walking was too painful). It was chalked upto some MSK problems, treated with physio ... but the pain seemed to get better by itself. Weird eh?

Anyhow, that's my story, and I'm sticking to it. Good luck Kenny in finding some answers that make sense to you.

Take care,
Jeanna

Make hay while the sun shines

Such AS flares consequent to stressing a joint are familiar when AS is already established and the body already has higher levels of autoantibodies to HLA B27. The local inflammation induces and allows the components of the immune system to get at the joint and the inflammation will get worse. But maybe it is also conceivable that there can be a sort of pre undiagnosed AS when symptoms are not yet showing but levels of autoimmune activity have been growing and the trauma kicks things into top gear. I don't think this is incompatible with the idea of an 'infection' as ultimate cause.

Rule 6.7. (c) ... It is forbidden to punch it forcibly, to pick it up or to knock it over. Improper clock handling shall be penalised in accordance with Article 13.4.

Truth is we're speaking about the hypothetical. Of course the ideas don't have to be incompatible, but what jump starts autoimmunity may not come down to one uniform cause either.

Jeanna

Make hay while the sun shines

My AS started when I resumed cross country running at the age of 23. I came back from training, pounding the roads, and my hip became very painful. The following evening I tried to run it off, and that was disaster. But at that time I was living on chapatis and rice because I shared a flat with an Indian guy, so according to my hypothesis it all adds up ok. And why try to make it all more complicated when it isn't necessary?

Rule 6.7. (c) ... It is forbidden to punch it forcibly, to pick it up or to knock it over. Improper clock handling shall be penalised in accordance with Article 13.4.

Edited by bilko on 09/03/02 06:59 AM (server time).