Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Am I or Amn't I?

Patience seems to be what you are gonna have to have in large supply. WHen you ain't among the HLAB+ seems Doc's have much trepidation in finally pulling the trigger an a diagnosis that it "is undoubtedly AS."

If your Doc seems to care and wants to get it right sounds like a good Doc to me.

As for your final and most important point. Absolutely right. Linc, Ian you and I have no excuse for not getting together. We simply need to pick an afternoon or evening and a place that may serve a refreshment or two to sit and chat. I say we start picking right now.


 
stevec-they also serve who stand and wait

I haven't read everything posted so forgive me if I say something already said.

I wanted to reply because your story sounds somewhat familiar.

I too had my doctor changing his mind. And let me add, most of the time, I love my doctor. He listens to me, answers all my questions, and isn't afraid to admit when he's wrong, confused or just at a loss.

Here's my story.

I had low back trouble since High School. I always thought it was because I fell off a trampoline when I was in Jr High. I got pregnant for my first child around 23. During that pregnancy, my "hips" got so bad I couldn't walk at time. I went to a chriopractor every week to get relief. I never recovered from that child but begged my hubby to let me have the 2nd child before we messed with tests to find out what was really wrong. I had the 2nd baby and again, didn't seem to be recovering. But this time I must have worded it right cause my doctor said it sounded like I was describing RA. My baby was just under a year old when I got the DX and started meds. From Nov to March I progressed fast. I was already being switched drugs to try to find the right one for me.

Now, I'm the kind of person that believes part of your health care is being educated and taking care of yourself. So I got on the internet and joined sites like the Arthritis foundation. I started getting books and info on RA.

Heres the kicker..... One of the books I got decribed many of the different diseases under RA. One being AS. Now, I couldn't even pronounce it, but as I highlighted stuff in this book that seem to pertain to me, I realized I had highlighted the entire section on AS.

I took this to my doc. He wasn't sure, but he was willing to listen. In time, after doing my own research and working with him, he finally admitted, this had to be what we are dealing with.

Now, what is my point to all this? It starts with you. Arm youself with information. Learn all you can. Take it with you to your doctor visits. And remember, sometimes the dx isn't as important as just taking care of the body. Many meds cover more than one of the diseases, so keep learning and keep trying and working with the docs.

And, even if they don't say you have AS, don't go away!

You never know what you'll learn from us, or what we'll learn from you.

Good luck with your "battle"

Deborah G

Hi Andy

In reply to :
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I dunno. It seems I only come here (lately) to complain. I hope I'm not being a drag! I am really trying to lighten up, but it's been difficult.
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We are here for support and if a person has to whin, complain, scream or cry that is what we are here for.

I know how you feel I went to Doc after Doc just to be told that I had nothing and then one Doc said all I had was Chronic pain. Well I knew that before I went to the first Doc. All I wanted to know was what was causing the pain. Well for 8 or 9 months I continued to work. I unloaded 45 foot trailers filled with Office Furniture and I worked from 7am until 10pm 5 and 6 days a week. Then they Laid me off on my Birthday and my wife asked me to go and see one more Doc so I did and he sent me for some X-Rays and the X-Ray Tech was the one that noticed that I had Broken my C1 and C2 and that is when I started to see more Doc's but because I walked into the Doc's Office they called my Surgery elective surgery and I had to wait for 5 months more with the Broken Neck and then after the surgery they said I had AS. It was a long haul and still is but I know I will make it and so will you never give up and no matter what anyone says never Stop coming here for support. We all care about each other and we are all connected through this site. Take Care Andy and you keep posting.

John

Andy.....

I have to agree with the others. If your Doc seems to care, then I would stick with her.

And don't be so daft...... you are always welcome here. Jeez... I've done my fair share of moaning and groaning in the past...... that's what is so great about this site... just get it off your chest!

I hope things get sorted out soon.... the not knowing is the worst part...... do I or don't I??? It must be driving you mad. I was lucky. My GP figured I had AS and sent me to a Rhuemy who confirmed his diagnosis.... pretty easy really.

Keep your spirits up buddy! We are all here for you OK!!

Maxine

May the roof above us never fall in, and the many friends gathered below it never fall out.

Steve,

I used to have an overabundance of patience. I still think it's lurking around here somewhere, but I've been a little too frazzled lately to be able to dip into it as easily as I used to... But you're right, it's just the thing I need.

As for where and when to get together, weekends are generally better for me, since a trip into Manhattan is a project, whether I take the LIRR or drive... And I think you may have some physical considerations to take into account? (Please correct if I am mistaken.)

At any rate, some NYC venue might be most convenient for all of us, but I won't (can't) get any more specific than that. I also don't want the responsibility for organizing this thing... but I'll be happy to cast my vote!

Thanks,
Andy

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"To sing is to overcome pain and death." -- Susana Baca

Deb,

Thanks for your story. I know it's sometimes difficult to pin these things down. In my case, I almost have too much information. My symptoms are also not "typical" AS, being that my ankylosing is in my neck, not my lower back. Another thing is that DISH (which is also sometimes known as Ankylosing Hyperostosis) shares many similarities with AS. Most of my pain has been in my neck and shoulders, but hips, knees, ankles, elbows have all been involved at some time or other, and things have only been getting worse recently.

I think I'm more concerned about what to do than about what I have. I am trying some alternative stuff (Rutin, bromelain, et al) to see if I can forego the Enbrel and other suggested treatments...

Regards,
Andy

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"To sing is to overcome pain and death." -- Susana Baca

John,

I really want to thank you for your support. I am continually blown away by you and others like you on this site who are obviously going through a lot worse stuff than I could ever imagine, but are so upbeat and positive about AS and all the things they are and have had to deal with. When I read your messages, or see the other posts in the forum, it really does help me feel that no matter how bad things may get, there is hope and here is a community of people that really care and aren't afraid to say so.

I don't know what else to say but "Thank you."

Andy

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"To sing is to overcome pain and death." -- Susana Baca

Maxine,

You're another one who I owe more to than I think I can ever repay! Life has been pretty crappy for me lately, but I really appreciate your concern, support and friendship. Thanks so much for your attitude!

Warmest regards,
Andy

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"To sing is to overcome pain and death." -- Susana Baca