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Old 12-31-2009, 03:13 PM
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alice md alice md is offline
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Join Date: Sep 2009
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15 yr Member
alice md alice md is offline
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Join Date: Sep 2009
Posts: 884
15 yr Member
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sorry, if this sounds unsymphathetic, but I personally would not smack him and actually make sure that he is healthy and well for many years, if I had right from the begining, a neuro that would diagnose and treat me, like yours does, having a seronegative atypical MG.

I assume that he is probably not very young and finds it hard to work with this computer system. he is probably right, as too many physicians now days are treating the computer instead of their patients. have you seriously discussed his reasons to prefer the other center? maybe he thinks that there is better and more personal care there? maybe he is more happy with the way they treat his patients?

I realize that -"It's at least a 30 minute drive each way and I don't have anyone who can drive me there once a week for 4 weeks". and I can appreciate the difficulty in that, but there are some who have to go to another country or state in order to recieve anything that resembles reasonable care.

and some who don't even get mestinon, not to speak of rituximab.

some who are sent for a consultation with a world leading expert, and after a 4 hour back and forth drive, from which it takes them a long time to recover, come back with a piece of paper saying that they could have myasthenia, and it has not been ruled out.

I know how hard it is to deal with this illness, but I think you should concentrate on the medical care and not relatively unimportant details.
and it would be good if you could find someone to accompany you there any how. a friend or relative, that could help you deal with it all, at least for the first time.

and stay on good terms with your neuro. I am sure there are quite a lot of people who have been writing posts on this site, that would have been glad to be under his care, with all the inconveniencies that go with it.

take care, and most importantly hope this treatment really helps,

for a happy and better 2010

alice.
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