Celeste!

I just wanted to let you know that his thread has inspired me to go away and do some tests with my dB meter to see if Mestinon affects hyperacusis or not! So thanks for that!

At this point who knows….Mestinon worked on my eyes and deltoids when I least expect it to, and then on some breathing ´in´ difficulties 2 days ago when I was actually trying it for something else. So you never know!

By the way – Since you ask, I have hyperacusis in both ears but only distortion in my left ear, which like with some of you had been repetitively exposed to loud noise over time. Now I have fluctuating reverb in that particular ear - like ocean waves crashing after every spoken word in a sentence believe it or not! What the heck could that be?!

Anacrusis.

Mine tends to be "crowd deafness"
http://en.wikipedia.org/wiki/Unilateral_hearing_loss

It seems to be the fine-motor control of the small muscles that gets me. I know it is the MG because it is not as bad early after a dose of mestinon as it is when I'm coming due for the next one.

It is amazing to me all the symptoms I have had and still hadnt even connected them with MG.

I just this moment realized that MG is reason why I have so much trouble hearing conversations when watching movies! Over past few years I had even started using closed captioning feature but never realized it was a health issue. I just thought it was problems with movies these days :-). A few years ago I went to Ear specialist but he told me everything was fine so I dismissed it like all the other things.

Thanks Celeste and everyone else for sharing otherwise who knows how long it might have taken for me to connect the whole hearing thing.

My husband had been telling me for years that I couldn't hear so I finally got my hearing tested. He was right. I have moderate heating loss in a "cookie bite" pattern which can be caused by autoimmune disease. I now wear hearing aids. I was amazed at what I had been missing, the wind in the trees, rain at night and my husband's behind my back muttering.

I could not be bothered to go away and start experimenting with decibels, Mestinon and my own pain threshold. I have to draw the line somewhere!

But what I have noticed is this:

Without any doubt whatsoever, through observations at the workplace with consistent sound levels the hyperacusis and hearing distortions that I experience are linked to periods with excessive myasthenic weakness. It can be a coincidence but then at least I found out that it is something fluctuating therefore hopefully not pathological.

A good friend on another forum shared this info with me:

Stapedius Reflexometry - which is, according to the following, a simple and, even more importantly, an objective test for the diagnosis of MG:

www.ncbi.nlm.nih.gov/pubmed/7381518 and www.ncbi.nlm.nih.gov/pubmed/2795101 and this which recommends the test in more complicated ocular and bulbar cases of MG: www.ncbi.nlm.nih.gov/pubmed/10782353

I had been experiencing a stopped-up right ear for at least a year prior to getting diagnosed with MG. Nothing serious, just noticeable. From time to time I would even hear a clicking sound in there. Also noticed what felt like a lump in my throat on the same side, which I thought might have something to do with causing the stopped up ear. Even began to imagine some sort of Thyroid problem. Or could it be irritation arising from my acid reflux? Yeah, that's it. Mestinon erased 90% of both symptoms. It was MG...the first subtle sign. Then came the swallowing problem, then the vision, then the eyelid droop, then the speaking problem, then the chewing strength dropped to the point where I lost 20 lbs because I literally couldn't chew for more than 3 minutes. Probably 14 months or so of ever increasing symptoms. Looking back on it I knew I was in trouble but was afraid to admit it to myself or anyone else.

I have severe ringing in the ears since my MG symptoms started. It used to come and go. I now have it all the time. I wake up with a low ringing that gets progressively stronger as the day goes on. It is sometimes so load that it interferes with my hearing. Is this MG related?
kathie

Celeste, If you're in a band, don't assume it's the MG causing the problem. Sure, it can but have you seen your primary doctor or an ENT to check it out? It can also be a sign of allergies.

Annie

Annie,

I had been assuming that the sudden ear stopping up thing was allergies. Then I started to notice that it happened every time I work too hard or too long.
I have joked that I am allergic to work. Rest stops it. Recently I have noticed that it gets better if I take my mestinon. (Sometimes it is hard to take it exactly on time while I am working.)

I do need to go to an ENT. I have been hesitant. There is little doubt that he is going to want to do nose surgery on me right off the bat. My daughter had a lot less nasal problems than I do, and she ended up getting her nose roto-rooted. I may try to work out an appointment some time...

I CAN TOTALLY RELATE. WHEN I WOULD TALK TO MY GRANDMA ON THE PHONE, THE EXACT SAME THING USED TO HAPPEN TO ME. IT IS MG RELATED! I WAS DX'ED WITH TMJ - AND SCHEDULED FOR SURGERY MARCH 26, 2006 BY A "SPECIALIST" - @ THAT POINT I WAS TO WEAK TO BREATHE ON MY OWN AND LIKELY WOULD NOT HAVE MADE IT THROUGH SURGERY.......ANOTHER THING, WHEN YOU ARE WEAK DO NOT DRINK ANYTHING CARBONATED - EVER! I ASPIRATED SO MANY TIMES THERE WERE SPOTS ON MY LUNGS..............JUSTB E CAREFUL

ERIN