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Originally Posted by en bloc
Oh, I agree! At least he had to knowledge to order the lip biopsy and that gave you the Dx.
Doctors can chose to follow new research or not. Many don't have time and focus their studies on what they do know (like other more common diseases). Just don't let the lack of knowledge (from the doctor) send you in a direction that is incorrect. You can take your research (print your sites/articles) and show them to your doctor. Some doctors don't like patients to do this, but I'm of the mind that I'd rather have a doctor that is willing to learn what they don't know vs one that works off outdated or lack of information.
I'd love to read any article you've found on SVID from Sjogren's being treated with Rituximab. I'm always interested in treatment info on Sjogren's...especially since I have SVID.
Never hurts to try to get results...give them a call. I have gotten results by requesting the CD of the MRI (in the US, they commonly give CD copies for patients to take to other physicians)...they usually stick a copy of the written report/results in with the CD. Then I can read results before doctor calls and I'm also prepared with questions (since I've already seen the report). The worst they can say is NO.
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Wow that's amazing re the CD! In UK many of us can't even access our blood test results in print form or get copies of consultant's letters. It's so paternalistic. My friend is getting up at dawn tomorrow to launch a tantrum upon our GP practice manager (primary care) because they sent her a text refusing to give her one of her repeat prescriptions and then lied, saying they had sent her a letter and a form to complete, when they had not. She has Addison's and Sjogren's (weird coincidence as she's my new friend here and we met through mutual friends who were unaware of our common health problems) with SFN in her toes. She was a head teacher until she was retired early on ill health grounds and she has offered to come with me to my neuro appointment next month. I do all the research into our shared condition and symptoms and she does the head teacher thing - quite a mutually beneficial arrangement really?!
I did give my neurologist the Birnbaum/ John Hopkins article about neuro Sjogren's back in March. She waved her hand disparagingly at me and said "yes yes we have other patients with Sjogren's - I know about this.." But I notice she handed everything else back to me telling me I was over thinking everything - but kept your rheumy's article?