Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Post Mayo Blog

Yeah, I'm glad I didn't end up in Minneapolis!

Sue is a fabulous friend and I am blessed to have her in my life.

Sometimes crying is all there is to do and maybe even the best thing there is to do.

Karen

Dow,
1) Thanks for the affirmation and for being there with me.

2) I hope this helps somebody.

3) Treating my symptoms is the part of this that I feel we've done well all along. I've worked intensely with PTs and chiros, and a podiatrist, have done a lot of things on my own and have a TENS and IF stim. I needed Mayo for a global cause, not for symptom management, but they weren't able to give me what I needed.

4) Yup, western medicine doesn't want to diagnose what it can't treat. For me, maybe someday....

5) Maybe I should publish my Mayo Blog.

6) My heart just breaks when I hear about people's struggles with infertility. It's so a difficult thing to want a child and not be able to do so. I'm glad you at least know you gave it your best shot, Dow.

Karen

Sue,
The thing is, I keep wondering if holding it together was really in my best interests. If I had comopletely broken down at one of those last two appointments, maybe they would have really gotten how difficult this is for me. Would it have made any difference in the end, though? I doubt it.

Lest I seem too heroic, I want to tell you that is was very likely the coming here to share that kept me from lashing out. Writing is very therapeutic.

I'm absolutely emotionally exhausted right now. Maybe some chocolate is what I really need.

Karen

Thanks, sprarkgirl, for being there. I really helped to know I had so many people cheering me on.

I'm not giving up yet.

Karen

Jay,
Thanks for traveling in spirit with me to Mayo.

I'm intrigued by the TCM concept and Cleveland isn't terribly far away. I'll add it to my list of possibilities along with several other suggestions I've gotten.

I'm glad to hear I'm not the only one who almost ended up at the wrong destination!

Karen

Yes, Michelle, I really do want answers. I wanted an answer so badly I was willing to take a week off of work, fly to a city 800 miles away, cough up the money for accommodations there, and go to 19 medical appointments in one week. I'd say that's evidence of being highly motivated.

If MRIs of my neck, lumbar spine and SIs don't show any damage at all, it's really hard to document that there is anything going on.

Frustrated doesn't even begin to describe how I feel right now.

Thanks for the hugs.

Karen

I'll keep hanging around, diagnosis or not. I like this place.

How long from the onset of symptoms was it before you had evidence on an X ray? How about an MRI? The rheumy was adamant that I should be showing SOMETHING by now, especially on an MRI.

Karen

I sorry you didn't get answers. I can relate. The hormones too. I think that is my fear also. As we have talked about I am waiting for my appointments at the Mayo in AZ. This past week my local Rhuemmy said I don't have AS because I didn't respond to treatment. I only tried two drugs, mind you. So I too have been weepy. I do realize that he dx me and said it was a clear case of it. That my MRI showed an advance case of it and someone should have caught it years ago. But he he quit me because his pet meds didn't work. So I too have been frustrated. Don't give up finding treatment. I almost did. I know its frustrating. But you will find the answers. It might be in the least likely place you expect to find it, but I have faith you will. Good luck in your continued search.

Karen - thank you so much for sharing your week with us. I'm so sorry that you didn't find the definitive answers you were hoping for, but am pleased it was an overall positive experience. Take your time now to settle back into life at home... with chocolate!!