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Old 11-21-2010, 02:45 AM #6
MomYaYa MomYaYa is offline
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Join Date: Nov 2010
Posts: 22
10 yr Member
MomYaYa MomYaYa is offline
Junior Member
 
Join Date: Nov 2010
Posts: 22
10 yr Member
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Wow. I had hoped I'd find support here, but I had no idea how much support I'd find OR how much hell seems to bind us!!!!!!

To reply quickly to some questions (though ALL that was said I have heard and appreciate!!!)

No, I've not been to an MG Clinic. They are pretty far away as far as I know. I'd have NO clue how to get in. And how do they work with insurance? I am going to UC Davis which is SUPPOSED to have top notch MG docs, but I didn't get one of THEM, I got the freaking resident idiot! @@

I saw an ophthalmologist a couple years ago when the weird vision episodes started, but I don't think he's a NEURO ophthalmologist.

No to a pulmonologist. Thus far, the only time I have trouble breathing is when I get winded from, say, walking a lot, or too fast. Kind of like 'normal' people do with exertion. But nothing that seems out of control.

Did someone say something about b12? I had it checked somewhere at some point and it was fine.

I did ask the new neuro for a copy of the report of my last visit, and she gave me some bs about how she only gives a crappy summary. I WANTED it becuase my husband had been unable to go, and I wanted to make sure I didn't forget anything. At that exact point I made sure that I will ALWAYS just fax over a request for records after every visit. WHY she doesn't want me to have them, I don't know. But it tells me I need them that much more.

I'm going to do the same for my Sutter Records, SOME of which I do have. I'm fed the heck up.

There should be a forum with a list of GOOD doctors so we can all have that resource.

Thanks again everyone. I don't want to 'like' that you all have been through (or are still going through) this hell, but it sure feels nice to have ONE place where I'm actually understood, and that there are people who can relate.

God Bless!

Kim
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