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Old 09-26-2012, 01:23 PM   #1
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New Doc wants me to prove I have Lupus

Iím 33 and was diagnosed with SLE about 10 years ago. Iíve been traveling out of town to my Rhemy. He is now retiring and I had to find a new doctor. Iíve had one appointment with the head of Rheumatology at our local hospital. It didnít go well. My chart hadnít arrived from my original doctor. New doc said it didnít matter, he makes his own determinations. Iím not having a flare and have been in decent health for the last year. He said he couldnít find enough markers to diagnose lupus. He said he is thinking more arthritis. I was dumfounded and couldnít come up with anything to say or ask. I have my second appointment with the new doc tomorrow and am trying to compile a list of questions, symptoms and triggers so that I can talk to him better than last time. Iím missing my old doctor that knew me and knew my body Ė and most of all believed me!! Any advice on how to handle this situation? I feel like I'm staring all over again!

 
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Old 09-26-2012, 01:36 PM   #2
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Re: New Doc wants me to prove I have Lupus

I had the same thing happen after being on treatment for lupus for 28 years. Doc didn't believe me and wanted to "diagnose" me, even though I went to him for a second opinion on my treatment. Aggravating! Anyway, you are on the right track. I would make a one page list of all your symptoms when it first started, your lab confirmations with ANA titers and patterns, what your sed rate and CRP usually run, what meds you have been treated with and your response, and any objective data, like urine protein, blood, skin biopsies, etc. to "prove" to him you have it. Not being believed is an insult, but try humoring him once, and if you still don't like him, I would look for someone else. Hopefully your records will be there and will speak for themselves. Anti DNA or + Smith antibodies carry a lot of weight in diagnosis, so if yours have ever been +, be sure to mention them. Also, antiphospholipid antibodies as well.

 
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Old 09-27-2012, 02:51 AM   #3
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Re: New Doc wants me to prove I have Lupus

Flurgrl, same happened to me when my local GP retired. Just for this contingency, when I was Dx'ed years before, I'd asked my rheumatologist to send an "FYI letter" to my local GP. (BTW, it's good to keep copies in your own files, too.) Alas, my new GP refused to read her predecessor's patient files, saying his files were "junk". Because she set a high-water mark for snark, I made her eat crow. A whole lot of it.

I agree with the advice you got, to humor him once, mainly because new doctors truly are on the hot seat no matter who originally diagnosed you, or when. Problem is, they're legally vulnerable, which makes them (understandably) cautious. Personally I wouldn't return UNTIL the key files are copied & forwarded, so as to avoid a repeat of appt. #1. Let us know how you make out, OK? Sending my best wishes to you, Vee

 
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