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May 09, 2005
Wasting Time
I spent the morning at the new rheumatologist....which was a complete and total waste of time & money. Not only did I not get any blood work to check for a flare-up, I left with my burning question unanswered:
"Were you an arrogant, condescending asshole before you became a rheumatologist, or did you take a special class?"
Because when a 'specialist' tells me things like my old family doctor wasn't competent to diagnose me because he's not a specialist like them, and they can tell by looking at me that I don't have an autoimmune disorder.....well, I not only think they're an arrogant, condescending asshole, but ignorant as well.
And when they follow up by telling me I've never been really sick because I've never taken a certain medication which practically cures lupus, well, that starts to piss me off. Because that is so totally wrong it's almost funny. And then the topper was when she blew off my explanation that I hadn't taken that medication because I refused it due to its potential side effects. You see, when I have a choice between A) a medication which may or may not work and has the possible side effects of blindness or death, among other things; or B) some other medication that may or may not work, but doesn't have any serious side effects, I'm gonna pick B every goddamn time. Call me crazy, but there you go.
So now I have to try & find yet another doctor because this one wouldn't do anything, and this is getting worse. Not only is the sciatic nerve in my left leg so inflamed that I can't stand or walk for any length of time without being in excruiating pain, Saturday I noticed a numb spot on my lip. Which is now spreading up the side of my face. Both of these, like my arm/hand problem, are old nerve injury sites. Gee, think there might be a connection there? Like maybe, gee I dunno, something attacking weak spots/scar tissue in the nerve sheath?? Something like maybe lupus like the neurologist said? Oh no, it can't be that because I don't have a rash. Just like about 40% of other lupus patients don't.
Madre de Dios, I freaking hate the rheumatologists around here.
I'm not fit company for man nor beast at the moment.
I'll go away now.
Posted by Rita at May 9, 2005 02:38 PM
Comments
God, I feel sorry for you! I hope you find a competent doctor and fast!
Posted by: Sue at May 9, 2005 04:28 PM
I'm available for random killings, retaliatory beatings and such. Not that I'm suggesting that you avail yourself of such services. I'm just saying...
Posted by: Keith at May 9, 2005 08:18 PM
Unbelievable. Not your story. That there are so many rheumy's out there like that.
By looking at you? Excuse me? Since when can you SEE autoimmunity?
Invisible diseases are common.
The first rheumy my PCP sent me to after finding the Anti dsDNA was highly postive, but my ANA was negative ..he said that I couldn't have lupus because you can't have lupus without a positive ANA and it'd be impossible to have lupus and myasthenia gravis ..it'd just be 'too strange to have two of these very rare diseases'.
I walked out, but went back one month later, totally NOT trusting him. 30% of all myasthenics have lupus. Hello? Lupus isn't rare. Hello?
He had re ran the lupus panel, this time I had a positive ANA and and the Anti dsDNA was up to 454. He STILL said no lupus!!
I have inflammatory lupus, pleurisy, mouth sores and a host of other things (those are off the critera list). But ..no, no lupus!
A year later, my PCP finally gets me into another rheumy who said it was absurd to ever think I didn't have it. The MG meds were giving a false negative ANA and he'd have dx'd me on symptoms!
he thinks I've had it at least as long as the MG, if not longer! He had me go off the immunosuppressant for 6 weeks to see what ANA does ... and it sky rocketed.
I wanted to call the first rheumy and tell him
" You know that award hanging in your office, the one for one of the top 100 rheumy's in the US? The reason it is from 1976 is because you've lost some skills since then!"
Posted by: Peggikaye at May 10, 2005 05:04 PM
I've been to 4 different ones over the years, and 3 out of the 4 were incompetent and/or assholes. The first helped get my lupus under control, but missed my thyroid problems & fibromyalgia. He eventually said those symptoms were all in my head.
*ahem*
The second, the competent non-asshole, quickly diagnosed the fibro and got me back on my feet. I'm trying to track him down now.
The third did the same as this last one. Looked at me & said I didn't have an autoimmune disorder of any kind. I insisted that he run the panel anyway. He was rather embarrassed when the results came back. But he was the asshole who insisted that I continue to take Vioxx, even though it was hurting my stomach.
Like you, I'm one of those atypical symptoms patients. I hear that a lot too. "But it's really rare for lupus to cause x symptom(s). Usually...." 'Usually' doesn't usually apply to me, at least medically.
I've gotten to the point where I'm like, you know, I fight enough battles just to get through the day. I don't need to fight my doctor to get treatment.
I saw that mental light bulb go on in the neurologist's head when I asked if lupus could be causing this. And until someone runs a panel & shows me otherwise, that's what I'll demand to get treated. It's so frustrating though to know that a simple blood test to confirm and a course of steriods would probably fix this. Yet no one will do it.
And thanks, Keith, but Mike says that's his job. It's always good to have a backup plan though, right?
;-)
Posted by: rita at May 10, 2005 05:25 PM