Disclaimer here- I'm an RN, and my best friend is an MD. I expect a lot from my doctors, but have been pretty bothered by my last two neurology appointments (MS neuro went from saying I might have early MS at the first visit to acting like she'd never seen me at the second; epileptologist chalked up my seizure-like episodes as 'anxiety attacks').
My rheumatologist has expressed concern that doctors here in western NY may not be able to determine if my symptoms are from lupus, or from MS. She said, 'I really think you need to be evaluated somewhere like the Cleveland Clinic'. My kids' geneticist is at CC and is a phenomenal, very caring man.
I typed up a list of my symptoms, along with a history of the past year medically, and emailed him with a request for help, if he had the time. He called me the very next morning, and spent the better part of today speaking with colleagues in the MS center and rheumatology/autoimmune clinic. He's working on getting me appointments in both clinics!
I'm so, so thankful to him for doing this. The main reason I appreciate his help is that he *knows* me, and knows how I am under normal conditions. I don't stumble for words, lose my train of thought, or get lost in my own neighborhood. He knows I don't exaggerate symptoms, and that I know the difference between an anxiety attack and a seizure. He can vouch for me being a sane, intelligent, rational person at my baseline- and, as we all have probably learned, doctors are not immune from dismissing complaints in those with invisible disabilities (especially women, IME).
I know CC has one of the best MS centers in the country- if they say I don't (or do) definitively have MS, I will believe them, you know? I told Dr. N that I want to be able to function again- to take care of myself, my children, and hey, crazy thought- I'd really love to be functional enough to work again someday! My husband is going to have to spend the foreseeable future overseas (he's been in the Middle East for a year already) because he can't find a job in the US, and we have to keep our insurance. So...I really need to be functional.
My rheumatologist has expressed concern that doctors here in western NY may not be able to determine if my symptoms are from lupus, or from MS. She said, 'I really think you need to be evaluated somewhere like the Cleveland Clinic'. My kids' geneticist is at CC and is a phenomenal, very caring man.
I typed up a list of my symptoms, along with a history of the past year medically, and emailed him with a request for help, if he had the time. He called me the very next morning, and spent the better part of today speaking with colleagues in the MS center and rheumatology/autoimmune clinic. He's working on getting me appointments in both clinics!
I'm so, so thankful to him for doing this. The main reason I appreciate his help is that he *knows* me, and knows how I am under normal conditions. I don't stumble for words, lose my train of thought, or get lost in my own neighborhood. He knows I don't exaggerate symptoms, and that I know the difference between an anxiety attack and a seizure. He can vouch for me being a sane, intelligent, rational person at my baseline- and, as we all have probably learned, doctors are not immune from dismissing complaints in those with invisible disabilities (especially women, IME).
I know CC has one of the best MS centers in the country- if they say I don't (or do) definitively have MS, I will believe them, you know? I told Dr. N that I want to be able to function again- to take care of myself, my children, and hey, crazy thought- I'd really love to be functional enough to work again someday! My husband is going to have to spend the foreseeable future overseas (he's been in the Middle East for a year already) because he can't find a job in the US, and we have to keep our insurance. So...I really need to be functional.
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