Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Crazy Making

Thanks for listening James. It's not only Medical World where things don't function as they should. It happens everywhere, but it's just more maddening when it's my life they are messing with.

Karen

I had a bone scan two years ago. It showed inflammation in my ankles, knees, hips, shoulders, elbows and wrists. The SI was black, but I'm getting conflicting opinions on whether that is indicative of inflammation. It doesn't matter because no doctor I've seen seems to think the bone scan results are significant.

You are reminding me, however, that I need to pin a doctor down on the meaning of those bone scan results. I've never really been clear on it.

Karen

Dr. Khan is the one who isn't accepting new patients. Or he is. No, he isn't.

The final answer seems to be that he isn't. I have considered writing him a letter asking him to see me just once for a second opinion. I'm waiting until the Pittsburgh rheumy gets back to me and then I'll figure out what to do.

Hanging onto my knot,

Karen

Wow about sums it up, Steve.

Karen

After I hung up the phone, the obscenities started to go through my mind. At the end of the conversation, I was concentrating on not crying because it's hard to talk and cry at the same time.

The Pittsburgh rheumy doesn't have a very high opinion of sulfasalazine. He said about 30% of people get better on it which is about the same as a placebo. I'm not agreeing or disagreeing; I'm just reporting what he said. He said that an ant-TNF is much more effective and will also help with my axial symptoms, so he ordered the MRI.

Happy eating!

Karen

Thanks for the good wishes, Glenn. I'm about ready to drive to Michigan if that's what it takes. Actually, my husband suggested I fly to Mayo and I'm considering that too.

I think this doctor in Pittsburgh is actually a good rheumy. He seems quite knowledgeable and knows how to listen to what I tell him. The problem is that I don't have classic symptoms and he feels in over his head diagnosing me. I appreciate his honesty.

It might get me down, but I'll never give up!

Karen

Tim,
No swelling. SED rate is normal. NOTHING shows up in blood work, X rays or MRIs.

I live in Erie, which has about 300,000 people. Pittsburgh and Cleveland both have major medical centers, so for something unusual I end up traveling there.

Karen

i've had doctors be able to get me in to other doctors when i was unsuccessful on my own. but then other times even they couldn't do it. but if the pittsburgh rheumy is agreeable to trying, that might work better than a letter from you. just another thought to throw out there.

sue

oh ugh honey. All I can really say is, I understand . . . they've done crap like this to all of us "hard-to-diagnose" folks . . . I'm currently dealing with it on Cody's behalf. They've decided that since they haven't found out what's wrong with him, it's all in his head. I'm gonna go Crazy-Pregnant-Cowgirl on someone's a$$ here pretty soon . . .
*sympathy hugs*
Bridge

Hi Karen,

Regarding your negative blood tests, my SED rate and ESR (oh wait, that's the same thing!) are normal. My CRP was elevated only slightly, but I've been low starch (I refuse to say "LSD" ) for so long, maybe that's why? Anyway, all my blood work has been normal, normal, normal. I think someone here said that's not uncommon? Was it Dragonslayer? Yes? Maybe?

Re: the x-rays being normal, maybe you should send your films out to another doc for review? It's possible they aren't looking at the right things, or that changes are very slight (shiny corners, slight inflammation, etc). Anyone here know of docs who are open to that sort of thing? I used to work for specialists who would review chest films on occasion, is why I mention it.

Is that helpful? I don't know. I just painted the kitchen and my shoulders, neck, and back are screaming, so I may not be very coherent.