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Myasthenia Gravis For support and discussions on Myasthenia Gravis, Congenital Myasthenic Syndromes and LEMS. |
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02-06-2013, 03:46 AM | #1 | ||
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Ah, sometimes I think most of them (neurologists) are just kind of "funny".
I've seen many, many specialist. I've been to at least one doc every specialism. And well, not to generalize of course, but they just always seem to be a bit strange in their contact wit patients, kind of like they lack some kind of social skills. This is just my experience, but my reumatologists never say: "oh you look all bloated" and make a sound to indicate my moonface "PFFFRRRT" when I show myself after starting prednisone. My haematologist or endocrinologist accept that I'm not just a random patient who lies there and waits for god-in-white-coat-almighty to do something, but that I want to be involved. Two neurologists talking about me, and use stuff like "globulines" and "melanoma" smile and say "Just look the other way, we're talking difficult stuff here. It's jibberish for you". Not to generalize, there must be some non autistic out there. Good luck with an enocrinologist! I know the best, he is fantastic, my best doc ever. He's not in the US though, sorry. |
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"Thanks for this!" says: | Anacrusis (02-06-2013) |
02-06-2013, 07:18 AM | #2 | |||
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Ravenclaw, do you have LEMS?
We've got a holistic pharmacy in town, so I reached out to them for a list of alternative-minded MD's with various specialities. I'm going to try my luck with a neurologist from that list. In my experience, the alternative-minded doctors often will have a better bedside manner, be more communicative and take more time explaining things. We'll see how it goes,.. the neurologist I chose from the list gets excellent online reviews from his patients. Fingers crossed I can see him within a reasonable time period. I'm not as impressed by the endocrinologists on the pharmacy's list but I set an appointment with one that's hopefully promising. If I don't have luck, maybe I'll fly to where you are and visit yours. I'm overdue for a vacation. Can I leave my body behind? |
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02-11-2013, 09:19 PM | #3 | ||
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You know I think you may be onto something with the POTS/dysautonomia. I have that as well and it can be VERY debilitating, AND mestinon is the treatment for it, so you would feel better with mestinon! Your breathing symptoms and chest pain actually do sound a lot like my dysautonomia symptoms...and I have it as part of small fiber neuropathy, which causes me a lot of loss of feeling in my fingers, and feet as well. It makes me off balance. It's very hard to walk up stairs without being out of breath and getting bad chest pain if I haven't taken mestinon, but it's the dysautonomia causing that part, not the MG. The symptoms are different. I'd make an appt for a tilt table test and autonomic workup. POTS can be very, very incapacitating.
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03-04-2014, 04:44 AM | #4 | ||
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Quote:
Side note- You can actually report this MD to the Board of Neurologist in your state. B |
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"Thanks for this!" says: | Bipedal Primate (03-06-2014), pingpongman (03-04-2014) |
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