Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group How do I make them listen.

Hi Shawn

PM me and I will give you a DOC's name and he will get the ball rolling for you. He is the one who got the balling rolling for me the second time round. Take Care.

John

Here's-2-U ! "DOC"

Hi Shawn,
Sorry to hear what you're going through. I wish I could help on the medical perspective but feel I am useless. On the family perspective, look out friend...
I've been in bad pain since 1990 and was only diagnosed in 1996. I have a wonderful wife and two wonderful daughters 9 and 13. My wife and kids are always worried about me. Some mornings, when I'm in pain, my youngest daughter comes to me and tells me that she sees I'm in pain. Just that little phrase and I know she looks worried for me. It hurts to see a child so young understand the pain I'm going through sometimes.
My family does anything they can to help me. On some very bad days, they rush to help me put my shoes on. So if they didn't care, they wouldn't go to this extent. I'm just so grateful for having them in my life. I hope you feel the same about your family.
If we have a Canadian get together in Ottawa next summer, I'll be looking forward to meeting you. In the meantime, stick around for the winter, we'll have a great time here.
If I go to Ottawa this winter, I'll PM you and we could meet if you wish.
Take care of yourself,
mars

Shawn,
I'm in the same boat as you mate - HLA-B27 negative and getting totally ignored by Doctors. Although you've had an MRI you must INSIST on another. Ask for a fat suppression sequence and a gadolinium augmented sequence. These MRI techniques have recently proven to be effective at measuring early stage changes in spondyloarthropathies such as AS.

No idea where you are in Canada but there is a group at Edmonton specialising in spondyloarthropathies. If this is close to you let me know and I'll give you their details. I'm fighting for an MRI right now and have been refused. Don't give up though mate - Doctors are often idiots....because you're young and still look fit they don't believe anything could possibly be wrong.

BTW do you know the difference between Doctors and God? God doesn't think he's a Doctor....

Let me know how you get on. And there is SOME hope out there (bisphosphonates, TNF alpha inhibitors etc.). Take heart in that.

Take care mate.

Jon.

Hi Shawn,
I am an HLA-B27 negative female with AS. I looked up three pages of info for
you that shows that research is going on in the present on people with
HLA-B27 positive AS and on people with HLA-B27 negative AS. They have found that other genes and subtypes are responsible for a person being
susceptible to getting AS. The research is still going on to get all the answers.
I have three sights that I can share with you about this research. Two of the articles were written in 2000 and one in 2001. And this research was done in three separate parts of the world. Don't let the Doc's convince you or anyone else that you can't have AS if your HLA-B27 negative. That is simply not true.
I thought maybe I could suggest to you to print out copies of this information
to show to the next Doc you see, which hopefully you can find one that recognizes AS in HLA-B27 negative patients. Don't give up until you find someone that will listen. Talk to the top people in charge if you have too.
Good Luck to you. These article are on a sight called Pub Med thru
Medline, connected with the National Library of Medicine. Also known as
Entrez PubMed. Here are the three page addresses...

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed
&list_uids=1099

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed
&list_uids=1140

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed
&list_uids=1097

Sure hope they will listen! You deserve better treatment than your getting.

Take Care,

Coleen Ann

Hi Shawn,
Just make sure the doc you go to is a Rheumatologist!! And you can call their office before you are actually seen and ask if the doctor has experience in treating Ankylosing Spondylitis patients that are HLA-B27 negative.
That way if they say no try another doc and don't even waste your time on that one. There has to be a Rheumatologist with some AS experience
somewhere near you!! Good Luck with your search.

Take Care,

Coleen Ann

Hi Shawn,
I can't say anything better than what's already been said, especially about docs and how AS is treated and all. Like I mentioned before, I also tested negative for the gene... I learned that having parents with autoimmune disorders, made me very susceptible to one myself, which maybe something to point out to your doc. The thing to remember, is the end result is usually the same and many never go into remission or have the disease slowed down, even with a diagnosis or with new drugs. We just continue to fight AS and learn alot of new ways to fight it from each other. It's amazing how some of the little ways help the most
You say you have two children to feed, I'm sure in many way they feed you. You say you have a beautiful wife to keep happy, I'm sure in many ways she keep you happy. Give them the opportunity to continue to do that for you. You have alot to live for and I'm sure they will not be better off with out you. Like many others, I have said that I time or two too, but not any more.
We all have our bad days, and when we do, we come here and talk about it, and leave here feeling better. We all have our good days, and when we do, we then come here and share that too, and then others can leave here feeling better. On our good days we share our strength, on our bad days they share theirs.
I guess that brings me to my point, which is, that by coming to this site you've made a very positive step.
We may not always have all the answers and sometimes may not have any, but we'll throw out our opinions and tell you what matters the most, and that's that we honestly understand and care.
We have empathy, and it doesn't come from being able to put oursleves in your shoes, but because we ARE in your shoes.
We understand what it feels like to feel worthless, depressed, suicidal, helpless and lost not knowing where to turn. We each came here and whined and moaned and groaned etc.. So, don't worry about coming here and complaining.. You have every right to complain, but in the same token you have every right to laugh and we do alot of that here too.
Stick around and give this place a chance to do what it's done for me and all the others, which is, among many others things...taught us how to KICKAS!
Take Care,
Lisa
PS
I hope someone here can help find you a good doc..

Hi Shawn.

I just want you to know we hear you. Almost everyone here has gone through the frustration of getting a proper Dx. It sometimes takes years for it to show up on Xray. I want you to know that when i was Dxed at 30, I had two children also, and i was in so much pain that I also had thoughts like you,wondering if they would be better off without me.
Now my children are 26 and 20 and I'm a new grandfather how much I would have missed. You need to find a Doctor who will help you with pain control, when that is taken care of then you will see things in a different light. Your right you are only at the beginning of this monster, and it will probably get a lot worse, you can't beat this thing but you can learn to live with it.
So don't giveup , theres research being done everyday and who knows they may discover away to stop AS in its tracks. So hang on and anytime you need to vent, what better place then with people who are there and understand.

RICK

Hi Shawn,

I think all of us here can to relate to the things you are going through. My GP is great and has done the best he can and always listens, even if he doesn't know all the answers. And he will even admit that he doesn't know them. My Rheumy diagnosed me the very first visit but didn't believe that I had as much pain in my chest area that I had told him about. After all sorts of different meds he finally sent me for a nuclear bone scan of the chest area. The results were that I had severe active arthritis on both sides of my sternum and active arthritis on both shoulders but not as severe and my SED rate had gone up to 70. After all of this my Rheumy finally realizes that I am not there to see him because I like him and had nothing better to do. My last visit I was in a lot of pain and under a lot of stress and by the time I saw my Rheumy...let's just say he stayed way across the room from me. I think he was afraid to get too close to me. I think it is so sad that we have to "prove" our pain. I am sure that if those DRs were in our shoes they wouldn't want to be treated like we have been. I hope we can be some help or at least be supportive to you and what you are going through. Keep us updated and let us know how you are doing. Remember you are not alone.

Take care and huggggggggggggs,

Lisa

Don't give up! My daughter, 17, is HLA B27 negative, but has a rheumatologist who acknowledges that she has spondylitis and treats her aggressively. She has terrible pain despite the meds and is struggling to stay in school -- her senior year.

There are docs out there who will listen -- you just have to keep gonig until you find one!

Sandi

Thankyou all for you most interesting imput, I feel alot less crazy now seeing that I'm not totaly alone in my experiances.