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Old 02-26-2009, 09:38 PM   #1
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I want to scream

I was diagnosed with Lupus by a hematologist. One month later I saw the Rhumie, He agreed from looking at the hematologist test. He told me to come back in a week to get the results of his tests. Today he is a totally different personality. He says he thinks I have Fibromyalgia and that the Lupus results had gone down. I tried to ask questions, to tell him what I was going through, the pain, loss of work, family issues. He told me to exercise. I can't get out of bed much less exercise. He shrugged me off and said yes you can. Come back and see me in 3 wks.!!!!! What the heck do I do now?!

 
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Old 02-27-2009, 01:06 AM   #2
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Exclamation Re: I want to scream

get a new doctor if he or she treats you like that again... it is not resectful to you has a humanbring... you have every right to have your questions answered and not be dismist like that...

 
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Old 02-27-2009, 04:14 AM   #3
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Re: I want to scream

Sophie, Maybe one problem is that your RHEUMATOLOGIST isn't accepting a Dx done by a HEMATOLOGIST? To be honest, in my book he probably shouldn't, any more than a hematologist ought to accept a Dx of some purely blood disorder done by a rheumatologist.

Did your rheumie tell you which labs were previously abnormal & now somewhat better? You could ask for copies of everything done so far, to start your own file, in case you ever switch doctors.

As far as saying your labs are now more normal: well, gee, that's one hallmark of lupus & its "close cousins", that some test values rise & fall with flares! However, I suspect rheumies usually want to see MULTIPLE "meaningful" positives, from blood &/or skin taken at different times. (Mine certainly did, before making a formal Dx.)

But whatever the rheumie's reasoning, it's his obligation to communicate clearly. I suspect that because these conditions are so complex, many doctors don't even take the time to try. (And that's horrible!)

Sad thing is, changing doctors so quickly could put you back to Square One, if the NEXT rheumie starts all over & wants to see positive results multiple times, so that's something to consider, too. Plus, it could take you 3 weeks, or more, to book with some other rheumie. Plus, some areas have lots of first-class rheumies, while others don't.

Obviously you're the only one who can decide what to do next, so I can only hope that something above helps you weigh your options. Post more when you can, OK? Thinking of you, Vee

 
Old 02-27-2009, 04:29 PM   #4
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Re: I want to scream

Sophie,

I had something similar happen to me with my first rheumie. I had been going to him for three or four months and when I had a flare-up, I naturally turned to him for help. It took a week for me to get an appointment to see him (and I had already been in a flare-up for a week before I called for help). Then, when I got there, my flare-up was pretty much over. He wrote me a script for steroids. I asked what I could do to help myself the next time I had a flare-up and all he could say was, "take these." Referring to the steroids.

He even had the audacity to ask me what I LOOKED like during my flare-up. My guess is I looked like crap, but what does it matter. I didn't bother to look in the mirror because I couldn't even muster up the energy to get up. I slept for more than 5 days almost straight. Anyway, I went to a different rheumie and got all my medical records transfered. My new doc asked if my old doctor was referring me. I told him "No, I am coming to you on my own because I need a doctor that I can talk to and who will listen and take my pleas for help into consideration." He said then you've come to the right place and spent the next hour or more discussing my health with me. Keep searching and don't be afraid to tell a new rheumie that you need a doctor who will listen and one you feel comfortable talking to.

Good luck and hang in there.

Tricia

 
Old 02-27-2009, 04:34 PM   #5
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Re: I want to scream

Thanks girls, I know I am being whiney.....this is just a nightmare and I am scared and feel so alone even though I know I have people around me who love me and sympathize.

 
Old 02-27-2009, 05:34 PM   #6
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Re: I want to scream

Sophie, That's NOT "whining"! Going back & forth between "You have lupus" and "No, you don't", depending on which dr. is speaking, is horrible. Being in limbo without any treatment stinks!

Is there any OTHER area of medicine in which this happens as often, I wonder?

Even if you decide to see this rheumie again three weeks out, you could start a list of possible new rheumies, in case you do decide to try another. (My Plan B worked; but I also had Plans C, D, & E ready to invoke. )

Anyway, I'm sorry you're going thru this. Hugs, Vee

 
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