[pingpongsis]

Well, I finally decided to log on after four long years. As my name implies (!), I am Mike's little sister. I know it sounds crazy, but our symptoms began within a few weeks of each other back in August 2010. Mike's MG is much worse than mine but I am afraid that mine is getting worse. The latest strange symptom I have had is trouble with my voice and ears when I have to project my voice for any period of time. I work for a university and had a very hard time with orientation this summer. I had to do a lot of presentations to large groups of students and my ears would suddenly "stop up" and it felt like I had suddenly jumped into a pool. Does anyone else have this problem? I have been struggling with my voice for several years.

I am also concerned that i might have to go back to the doctor and Mike has already probably told you about my adventures at Chapel Hill and Duke.

[pingpongman]

Welcome aboard Sis. What a surprise!!!
Mike

[Panorama]

Originally Posted by pingpongsis

I had to do a lot of presentations to large groups of students and my ears would suddenly "stop up" and it felt like I had suddenly jumped into a pool. Does anyone else have this problem?

Yes. I've had this happen twice, both prior and during my two MG crises. Here is a portion from a fax I sent my neurologist: "My sinuses are frozen. If I hold my nose and blow, I cannot get the pressure to change."

I wonder what would happen if, in this condition, I was driving in elevation. My ears usually pop when I hit the Summit on Highway 17, between Los Gatos and Santa Cruz. The Summit is only 1800 feet.

Welcome to the group. When I changed my screen name earlier in the year, I considered "pingpongboy", but went a different way. I was afraid that your brother would beat me up.

-Mark-

[pingpongsis]

Originally Posted by Panorama

Yes. I have had his happen twice, both prior and during my two MG crises. Here is a portion from a fax I sent my neurologist: "My sinuses are frozen. If I hold my nose and blow, I cannot get the pressure to change."

I wonder what would happen if, in this condition, I was driving in elevation. My ears usually pop when I hit the Summit on Highway 17, between Los Gatos and Santa Cruz. The Summit is only 1800 feet.

Welcome to the group. When I changed my screen name earlier in the year, I considered "pingpongboy", but I was afraid your brother would beat me up.

-Mark-

thank you for this! This only happens to me after speaking for over 20 minutes or so. When my ears stop up i really can't hear anything except the constant ringing and my breathing. My ears ring like crazy.

[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

[pingpongman]

Call her Beth. It has been a while since her last blood work. She needs it done.
Mike

[pingpongsis]

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.

[southblues]

I had those issues long before I was diagnosed. I thought it was allergy. I remember wondering why my ears would stop up from allergy and rest would help me get better. Mestinon and cellcept help the issue; I still have it if I push myself. It is pretty hard, because I also make a living by lecturing.

[Sonomagirl]

Originally Posted by pingpongsis

Well, I finally decided to log on after four long years. As my name implies (!), I am Mike's little sister. I know it sounds crazy, but our symptoms began within a few weeks of each other back in August 2010. Mike's MG is much worse than mine but I am afraid that mine is getting worse. The latest strange symptom I have had is trouble with my voice and ears when I have to project my voice for any period of time. I work for a university and had a very hard time with orientation this summer. I had to do a lot of presentations to large groups of students and my ears would suddenly "stop up" and it felt like I had suddenly jumped into a pool. Does anyone else have this problem? I have been struggling with my voice for several years.

I am also concerned that i might have to go back to the doctor and Mike has already probably told you about my adventures at Chapel Hill and Duke.

I have that in my ears when I'm really tired or overwhelmed. Also, my voice gets real raspy as the day goes on if I have not rested or time for a IVIG treatment. I'm new and only diagnosed for 8 months. We're not sure if it had been longer but just did not put it all together until my left eye was partially shut all the time. The Mestinon timespan helped get me through the night and 60 MG. 3x a day regular Mestinon. I think the voice and ears are just part of MG from what I've experienced thus far.
Glad you are on the forum now. I've learned more from all these great people then anyone else. In fact your brother was the first to answer a question for me.

Sonomagirl Debbie

[cait24]

Welcome to the group. Sorry the MG is acting up. My voice gets horse and raspy all the time. I work for a university too. I used to do training sessions but would lose my voice and cough uncontrollably from MG, so I no longer do them. I have constant tinnitus and my ears squeal/gurgle like they have fluid in them. This all started with the MG. There are tiny muscles in your ear. Several MGers have complained about similar symptoms. Do you take any MG meds?


kathie