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

I joined this site a long time ago, but i havent been here for a while. I first joined with questions and concerns about my dad who is 49 and was diagnosed with AS about 4 years ago. By the time he was diagnosed he had a lot of fusion and is still in a lot of pain. However, I unfortunately have questions about myself now. I am 20 years old and have been having probems for about 2-3 years. I started out with pain in my hips and butt which went away for a while. Then I had pain in my ribs for awhile when i breathed hard or coughed. Now the chest pain is gone and the hip and butt pain has been back for a while. I also have pain that is sharp and goes down my leg when i walk. I waited a while to go to a rheaumatologist, but am currently seeing my dad's, trying to get a diagnosis of something. I have researched this disease a lot since I found out about my dad, and I know enough about it to know that I have symptoms of it. the weird thing is that my dad and i are both HLA-B27 NEGATIVE. Has anyone ever heard of this being passed on without the gene? Thanks, Annabel

Hi, Annabel:

AS is hereditary, whether associated with B27, B7CREG, B60, or still other MHC factors; when testing is more thorough some genetic component will be identified.

I hope that you are visiting our NSD forum; you might avoid problems (AS problems: They get worse; there are no nice surprises with this disease).

Best Regards,
John




"Last winter blew so cold no lies, And my fire smoke would not rise;
Soon as the smoke tried to depart, It'd be froze up harder than a landlord's heart"
Robin Williamson, 'Smoke Shovelling Song'

Women typically have a tougher time getting DXed as while we have all the inflammation and the pain, fusion tends to occur later, and without fusion many doctors do not believe you have the symptoms of AS - - just as many doctors still believe AS is primarily a male disease. I had a lot of pain for 20 years before my SIs fused, was DXed originally with RA.

I don't know if I'm positive or negative, it was a moot point after I finally fused.

Cheryl

If you can't be a good example you'll just have to serve as a horrible warning.
Jennifer Cruisie

Dogs don't want to know about every other dog you've been with

Since my dx several others in the family have been dx with AS. I also tested negitive. I have done quite of bit of research into family historys and belive I can identify several ancestors that also had AS as far back as the early 1600. The sad part of being negitive is that it took over 40 years to get dx, by that time my back and ribs had totaly fused. I am convinced that being HLAB 27 neg and having AS can be passed on from generation to generation. I think it is often miss dx or the case is mild and never dx.

Wow! I do genealogy and wondered how you were able to trace AS that far back. I believe it is transmitted from generation to generation as well. My dad had it and I doubt if he ever knew what it was that had him in so much pain his entire life. I have cousins on my mom's side with the same aches and pains also. I'm the only one I know with a formal dx. Thanks - Helen

Hi Annabel,

We tend to believe that a diagnosis means there is an understanding on the part of the doctor of just what is wrong with us. If you consider that AS is merely the name given to a collection of symptoms that include tests for genetic components, observation of bone fusion in spine, and a miriad of other symptoms involving pain, soreness, stiffness and inflamation. Most of these same symptoms are common to other named diagnoses, i.e. Chronic Fatique Syndrome, Fibromyalgia, Gulf War Syndrome, and others. Assigning a name to a collection of symptoms in no way means the cause has been identified.

The HLA-B27 gene is implicated in many chronic diseases, but from what I have learned in the available reference material, testing positive for the gene doesn't mean you will develop AS, nor does a negative test mean you cannot develop AS. What seems more significant is your Dad's and your own previous history of infections. As more studies are done to uncover the causal relationship of certain infectious agents and their connection to a variety of diseases, the more specific and targeted the therapies can become.

You can read among the posts on this site about the specific successes some KickASers have had with diet, antibiotics, exercise and determination. We all have become better experts than most doctors at what ails us. Keep studying and learning and don't give up hope. Many of us have been dealing with this demon for years and we are all pulling in the same direction.

Rowr


"Rumors of my death are greatly exaggerated."Mark Twain

In the 1600 I have one ancestor that was tried as a witch. Some of the testimoney at trial mention blind in one red eye (Iritis?) Stiff neck, plus hump on back. Another ancestor who had been a farm labor in England could not work because of stiff neck and had gone blind. He was listed in the poverty rolls with these symptoms late 1700. Just little clue's like that. A Grandfather who was teased because he always looked at the ground. Friends say he was always looking to find money on the ground. etc.

Thanks for the info. I'll have to keep my eye open for those clues. Love - Helen

Hi,

the criteria for AS or the SpA diagnosis is fairly easy to meet......the bloods etc help. I've been tryng to find out more on the SpA's but basically AS is the prototype for them.

With the b27-ve (me) there's a known AS sub group which have elevated iGa2 and iGg normal esr and csp. That's on the kickas site search on google b27 -ve, I've also found that on other rhemmie sites, and is regarded as a more base immune defect than b27 +ve.

Some people have been b27 re-tested and subsequently found +ve. Apparently the tests are hard to perform and error on -ve and from what I have read are not dna tests but look for antigens. I'm not 100% sure of that but that's the conclusion I came to....

From previous elimination diets and erroring off them I have found lsd has provided alot of relief in the past and certainly extended the period before the big crunch. Look at your lifestyle and take out anything which seems to cause the symptons usually within 48 hours, diet was the primary thing in my case. as well as lying in bed for anything beyond 8 hours.

Do you get any funny Gastro things happening?

David

Hi Annabel... and Welcome (back) to KA!

Sorry to hear that your dad has this dreaded condition, and sorry to hear that you're experiencing some of the same symptoms too. Yep, your symptoms sound familiar. It is not always the easiest thing to get a proper dx, and can be even tougher as a female. I was lucky and was dx'd at 22 yrs,.. it only took 2 and 1/2 yrs for them to figure out which specialty could best play that guessing game . It is great you've joined KA in support of your dad, and hopefully you'll find everything you need here to help you along this path to self-knowledge!

Take care!

mig