Quote:
Originally Posted by AnnieB3
What a nice surprise! Hi, Mike's sis. What else should we call you? 
Hyperacusis is one of the lovely things that can happen due to weak muscles in the ear/ear area. That is a sensitivity or a low tolerance for sound. It might help if you sit down while doing a presentation, if you can. Or at least make sure you are fully hydrated.
I don't know why the neurologists at Duke need to put their egos before their patients, but it seems to happen a lot. I wouldn't expect that to happen at UNC (I've been there).
I am a AChR modulating MGer, too. Have you tested positive for binding antibodies since Mike last spoke of you?
Mike has told you to stay the heck out of hot weather or just getting overheated any other way, right?  It's amazing how quickly MG can get worse.
So, what do you need? Any questions? Do you need a good neuro? There are good ones out there.
I'm glad you decided to jump in! MG is one of those diseases that is tricky and there's a lot to learn about it. Even when I'm okay, I lean on these guys and what they have to offer. They all "get" MG and we don't have to pretend that we're fine when we're not. It's a great forum, Neurotalk, and we're lucky to have the support.
Annie |
Thank you so much for this, Annie! I feel better already! Mike is right. My last visit to a neurodoc was back in 2011 when I went to Duke. It was such a humiliating (and expensive!) experience that I swore to myself that I was done with neuros as long as my gp would refill my mestinon.
Things have been manageable for the past few years as I have adapted my lifestyle and schedule A LOT. But over the six months more problems are popping up and I am getting worried. Losing my voice, getting strangled all the time, double vision at end of day, ear issues......
I guess I am also scared again. I watched my mom take care of her sister with her head hanging down on her chest. Then I watched mom suffer with it and now Mike. And then I remember my neurodoc here in Greenville telling me "Myasthenia doesn't run in families." This is all so frustrating.