The problem with this question is that I don't know how to ask it. I have a new symptom, I suppose, but I don't know how to describe it. It only happens at night and when I'm lying down. When I swallow, something goes "twang" deep in my throat or neck. It feels a little like things that happen in your joints sometimes--not painful, but the feeling of something--a tendon, maybe?--catching on something and then twanging loose. I don't know if it's audible from the outside. I'll have to ask my husband, who's used to weird questions.

You can see I need some help here. How do I describe this to my doctor? Does anyone know what I'm talking about? I do have a big thyroid nodule (benign--I had it biopsied once, and I have an ultrasound every year to keep an eye on it) that may be causing this, but I don't want to assume it has nothing to do with the MG.

Thanks, guys. I really appreciate all of you.

Abby

Abby, It could be a problem with the epiglottis. Or the glottis. You'd think there would be a post-glottis.

http://www.getbodysmart.com/ap/respi.../tutorial.html

http://www.getbodysmart.com/ap/respi.../tutorial.html

An ENT doc could do a little office scope but, if it's a muscle weakness issue, that might make it worse. It made me worse when I had it done. They spray numbing solution into your throat to have a look see. Not exactly helpful to paralyze the muscles you can't use very well to begin with.

Are you having any trouble with breathing at night? Have you had a sleep study to check for apnea?

Well, those are my thoughts. I hope you figure it out.

Annie

Thanks, Annie. No trouble at all breathing, for now at least! The swallowing twang seems to coincide with my weak phases, so I'm thinking this has to do with the MG. I will check out your links. I think I will also avoid the scope unless I get alarmed about something! Thanks for taking care of me again/still.

My neuro is sending me to see Dr. David Weinberg in Boston. He seems to be more of an occular-MG guy, but I don't mind. I'm just happy to get a referral at all at this point, because a few months ago I was just being dismissed. Plus, just look at this guy! http://www.vitals.com/doctors/Dr_David_H_Weinberg.html
I don't know if he's a good doctor, but he looks like one heck of a human being!

Abby

I don't know if you can do this but do you have a tape recorder? Do you fall asleep quickly? You might want to see if you can record your "noises" while you are sleeping to see if there is a pattern during that.

This guy worked at Tuft's, so he can't be all that bad! Geez. Just go with it.

When my MG gets worse, I make all kinds of noises at night. When it super bad, I wake up unable to breathe. And all of those muscles down the GI tract are indeed affected by acetylcholine.

I hope you get it figured out and that this doc is a gem.

Annie

AnnieB3, did you have this done to check your swallow? I think this may be in the offing for me as my swallow is worse than I thought as the pulmo showed. I had a test that was no tube. It was called a flourescope I think. They were using an xray on me while I drank different consistancies of things. But no tube.

Annie59