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

I am new here. My father has AS. So thankfuly I know a lot about it, from chest pains to being grumpy because his back hurts.
I went to the doctor about a month ago, to see if I could get her to recommend a breast reduction. I have had back pains since High school and through pregancy. I have three children. I knew AS was in the genes, but I have been told repeatedly not to worry about it, because it is mainly passed down to males. My doctor just thought she would check for the gene so insurance wouldn't have a problem with her recommending a reduction. She did exrays and didn't find any bambooing, but didn't feel comfortable desiding if there where any spurs.
Now she wants me to see a specailist, but because of where I live the doctor will not be here until December. So now I am on the waiting game.
I was worried more for my sons and my brother, that I didn't even think about the chance I could get it. My brother hasn't even checked to see if he has the gene. We also think that my grandfather had it, but was never diagnosed. He died over 20 yrs ago.
I read that there is a blood test they do to decide if there is inflamation. Is there any thing else I should know? My father doesn't like us to know everything, but I am able to look up most of it.
I know just having the gene doesn't mean I will get AS, but you can't help being afraid.

I hear ya, it's maddening, this AS...

since it's in your family, I would at least get everyone blood checked for the HLA-B27, and then decide how to deal with it...women get AS too, I think the conventional wisdom there is way off...you know your dad has it, so test yourself and your kids for the gene, and keep posting here and checking out the info on KickAS...

just because x-rays did not show a 'bamboo spine' forming does not mean they didn't show AS in action, so maybe a second opinion on the x-rays would be helpful....

Also, don't assume you need breast reduction due to the pain!! That sounds major, and you can reduce the pain, if it's AS, in natural ways and with medication, so surgery won't be an option....just something to think about...check out our forums.....

Hang in there!!!!!! Yell at your brother to test for HLA-B27...
Peace
Linc

Linc O'Brien

Hi Christina,

I want to welcome you to KickAS (KA)!!

Linc is right...women DO get AS as you'll see from reading the posts here. You need to see a good rheumatalogist...one that will listen to you, hear your sysmptoms, know about your family history and run a blood test.

Your dad is most welcome to join KA as well. He may find comfort just knowing others have gone thru what he has.

Again, welcome Christina. Hope you'll stay and learn more.

Take care.

Michelle

WELCOME, Christina:

The test for inflammation is called ESR (aka 'sed rate' or erythrocyte sedimentation rate), and about 70% of us track this with disease activity; it is a great indicator for most of us, yet is not useful for the other 30 or so %. They will likely also check for Rh factor, but that is less applicable to AS and ANA is the test they often do if SLE (lupus) is suspected. If you have the marker, and have actual back pains that are persistent you may be developing AS (it might technically best be described as a condition caused by repeated episodes of KRA--Klebsiella reactive arthritis, which might be the actual disease as described by those who successfully treat it long term: http://www.kcl.ac.uk/kis/schools/life_sciences/life_sci/ebringerR.html). It is very important to decide whether you have early AS because there are much better things to do than rely on conventional medicine to make you worse faster. The following links may help: See item (5) "Early ankylosing spondylitis" https://www.kickas.org/medical/AN2.html; AS Primer https://www.kickas.org/as_dietary_primer.shtml.

Glad to have you join our group,
John

Thanks to you all for the encoragement, I guess I was just still in shock that I have the gene. My father had been worried about my brother so much and never thought that I would get it.
I have thought about a reduction for years, but now I don't know if it will do any good or not. My father thinks it will, but my doctor doesn't know if it might make things worse. So when I go to the specialist, I have to see if he recommends it. If he doesn't then my insurance won't pay for it. I wouldn't get it done if he doesn't recomend it, because I don't want to get worse faster.

Hi Christina,

Welcome to KickAs. I was also told that I probably didn't have AS because it is not to common in women. It wasn't until I told my doctor that my father, brother, grandmother and aunt all had it (with me that's 3 women and 2 men in our family with this disease) - so much for it being more common in men than women. If it makes you feel better my dad and aunt who have AS were two out of six children to get it. So it does skip some people. Ain't genetics a funny thing!

Anyway you've found a great group of people who will listen to any grips you may have.

Again welcome to the KickAs family.

Kym

My father is one out of six (three brothers and three sisters). He is the only one with AS, but he is also the only one that checked to see if he had the gene. He only checked because of back pains.
I haven't told my aunts or uncles that I have the gene. My father doesn't want my aunt worring about her girls. She gets worked up real easly. I still hope my brother gets tested.
Thanks for the reply.

Welcome to KickAS. I assume your name included something about Pegasus but got chopped off. Sorta symbolic since that is what happens when women discuss AS with Doc's, their fears get chopped off with the notion that AS is predominantly a male disease.

Well I have AS passed down to me from my mother and my mother's mother. Although neither of them had classic bamboo spine and I am Oh ever so classic in that sense it doesn't mean that they din't have AS. Sooner or later the falsehood that women don't get AS will get laid to rest.

I hope you never have AS. The blood tests will be inconclusive in any event sice women without the genetic HLAB marker can have AS or those who show positive may never have signs of AS. Gastro and hip and spine issues seem to define AS. If you think you or a family member may have AS hang around here since there are lots of folks more informed than I about med's and alternative options like the NSD diet.

Nice to meet you in any event.

 
stevec-they also serve who stand and wait

That was my original intent for my name, but on the one program it cut it off, so I am just using the same for everything.

Thanks for the support. I just want to be as prepared as I can. Now I am just waiting until my appointment in Dec. I just want to know one way or the other. I know that the doctor can be wrong, but any answer is better than waiting.

The waiting game can be very aggravating.
When I was first sent to a rheumy, he did test and mentioned AS, but ruled it out saying "woman don't get AS"
He then sent a report to my primary stating this, but also said something is definitely wrong and he felt that with further testing they should be able to find the problem.
My primary never showed me that letter, and kept leading me to believe it was all in my head.
I finally asked him to refer me to a rheumy who I had heard a lot of good things about and she diagnosed the AS and explained to me that woman are equally effected by it. She asked for any reports from any other doctors who checked me out and found the report from the first rheumy.
She showed it to me and I was so upset that my primary did that to me.
I got rid of him quickly but not before I had a chance to confront him with the fact that I had AS and woman do get it and that he was unfair to hold back that report.
I did ask my rheumy and my new primary about having my children tested and they both said that they don't like doing that because of the fact that not everyone who test positive gets AS. He said they usually only test for it when problems similar to AS start arising, which they can't find an answer for, and if there is a history of it in the family or other auto-immune disorders.
I can see their point, as I am sure alot of people who test postive would probably just worry all the time...fearing they may get it or whenever any pain shows up in the spine or elsewhere, would automatically jump to the conclusion that they have it.