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

For those of you at all interested in my continuing saga of misery and mystery...

I had my second follow-up with my rheumy yesterday, and now she's not convinced that I have AS at all (which is what she told me a few weeks ago), but that I have DISH everywhere, including my cervical spine where my ankylosing is.

It seems that the radiologist who read my x-rays initially gave the AS diagnosis, but he wasn't the "regular" guy, and the regular guy thinks that it's DISH. However, my rheumy only spoke to him briefly just after my last visit, and wanted to speak to him again to get a clearer picture of why he thinks it's DISH and not AS, but they didn't even try to follow up and get more information until I showed up at their office last night. (My rheumy also says that my being HLA-B27 negative is a strong indication that I don't have AS.)

So, I have a couple of questions:

1. Should I be looking for another rheumy? She seems to care, and wants to get it right, but someone in her office kind of let me slip through the cracks a little. My inclination is to give her/them another chance, but I'm interested in hearing opinions.

2. If I don't really have AS, but only DISH, AH or whatever, am I still welcome here? I hope so! I really like youse guys!

Anyway, according to the second radiologist, I might also have Paget's disease, but not in an "active" state. If you don't know what that is, here's a definition from medicinenet.com:

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Paget's disease is a chronic bone disorder that typically results in enlarged, deformed bones due to irregular breakdown and formation of bone tissue. Paget's disease can cause bones to weaken and may result in bone pain, arthritis, bone deformities and fractures. Paget's disease is also known as osteitis deformans.

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Aren't I lucky?

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.

Thanks for listening,
Andy

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It only hurts when I laugh.
Too bad I find life so funny...

Is I is, or is I ain't?

Andy, my diagnosis is non-existent (possibly AS or PsA or mebbe RA), although I am HLA-B27+, my syspmtoms are atypical. My extremities are more affected than anything, possibly my c-spine, but I attribute the c-spine stuff to when I broke my neck in 2000 (C-2, C-5, C-7, T-3) I don't know if things will get better, stay the same or get worse, regardless, it's going to take a team of wild horses to drag me away from here, AS diagnosis or not .
Hope that helps.

Ian

P.S. being local, you probably remember the case of the two Mexicans that got abducted and severley beaten in a warehouse in Sept 2000, just because they were Mexicans. That was the call that I was responding to when I got into the car accident that broke my neck and back (9/17/2000). We originally got dispatched for it as an MVA (Motor Vehicle Accident), as the two workers stumbled out, very bloody,onto the Long Island Expressway from the warehouse.
Kinda creepy for us firefighters knowing where the guys were beaten, as we used to train in that building all the time (abandoned warehouses are great for search scenarios).
Okay, enough off-topic rambling, I hope I answered your concerns in my first paragraph.


Beer is proof that God loves us and wants us to be happy. --Benjamin Franklin

Drew, don't know anything about DISH. What is it, please?

Anyway, I'm sorry you're having a rough time getting a diagnosis. Sounds like your doc. really does want to help you, so I'd stick with her.

As to you being welcome here even if you don't have AS. Well, DUH!!

Hugs,

Kat

Ian,

I hear you. Thanks for the encouragement!

I do remember that incident. Life does suck every once in a while, doesn't it?

On another topic: When do you think us Greater NYC area folks might have some sort of get-together? I'm all for it, but I'm not around here much (today being an exception).

Thanks,
Andy

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It only hurts when I laugh.
Too bad I find life so funny...

Kat,

Here's a definition from the Amersham Health Medcyclopaedia:

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Diffuse idiopathic skeletal hyperostosis (dish), a disorder of unknown cause characterized by excessive bone fomation at skeletal sites subject to normal or abnormal stresses, generally where tendons and ligaments attach to bone. The spine is the predominant site of involvement, although extraspinal sites may also be affected. Some patients may develop ossification after surgery or in response to coexistent diseases, such as rheumatoid arthritis. This disease is also known by other names, including spondylitis ossificans ligamentosa, spondylosis hyperostotica, senile ankylosing hyperostosis of the spine, Forestier's disease, spondylosis deformans and vertebral osteophytosis.

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(I added the bold emphasis, above)

Here's a link I was given by Cheryl (or someone else?) about DISH, with more information:

http://www.emedicine.com/radio/topic218.htm

Double DUH! But it's nice to hear that I'm welcome!

Thanks,
Andy

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It only hurts when I laugh.
Too bad I find life so funny...

Ian,

I think we need someone (NOT ME!!!) to volunteer to organize this!

Any ideas?

Andy

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It only hurts when I laugh.
Too bad I find life so funny...

Thanks for the info, Drew!!

I'll call your Double Duh and raise you a triple Duh!

Hugs,

Kat

When I first suspected I had AS, I hit the medical books to see what I was looking at and came across DISH. Somehow, I got it into my head that DISH was not as bad as AS. When I met the rheumie for the first time, I tried to suggest that I had DISH, not AS. He put the X-RAYS of my (non-existant) SIs up on the light box. "AS," he said. "No way it's DISH." So, my colloquial guess -- I don't even play a doctor on TV -- is that if you've got fusion in the SI joints, you've got AS.

I'm sure there are more sophisticated criteria, but the SI involvement seemed to be the threshold issue for my rheumie.

FWIW and all that.

Adam Rodman

Adam,

Too bad I don't have fusion in the SI joints (do I?) only in my cervical spine, so far. I'm always making things difficult for people!

Andy

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It only hurts when I laugh.
Too bad I find life so funny...