Welcome! Same happens to me - it's awful.. it's always when the rest of my body is weak as well.. As soon as IVIG kicks in, I am good! I get headachew with the ear pressure/whooshing sound.. makes me kind of feel disoriented - I can't stand it!

Well, Beth (thanks, Mike), MG DOES run in families! My friend and her sister have it. I've heard of other examples of that, too.

You could try to see a neuro-ophthalmologist, so they can assess the double vision. It's as if we have to compile "evidence" as one would in a court case!

Are you short of breath at all?

Please don't be scared. MG is manageable. As long as you understand how unpredictable it is, have a good doctor and treatments, and balance activity with rest, life can be fine. Great? For some people. In my case, "great" is more of a perception than a reality.

Some MGers are having luck with Rituxan/Rituximab and going into remission for months or longer.

Did you see Dr. Howard or any of his colleagues at UNC? Does anyone know of a GOOD neuro in NC?

If you can't swallow (or breathe or move well), it's time to head to the ER, via an ambulance. But don't be scared about that either!

You really do need a neurologist to champion your care, though.


Annie

Not exactly the same thing but how many ear threads are there? I've been getting very occasional shooting or stabbing pains in my ears. Ring any bells for anyone?

I am taking Mestinon 3 times a day. Most of the time it works great but when I am REALLY tired it doesn't do much.

You're taking Mestinon three times a day? At what dose?

Mestinon usually needs tweaking. Sometimes it's the frequency that needs increasing, sometimes the dose amount, and sometimes both.

If you take too much of it (tell me if you know all of this already!), you can get too much acetylcholine and have a cholinergic crisis. A myasthenic crisis is when you don't have enough acetylcholine.

I take 90 - 100 mg. every three hours, round the clock. But that's what works for me. I can't have the other meds unless I go into a crisis. There are times when Mestinon doesn't do enough and my body literally puts me to sleep, usually after running errands.

Don't experiment without discussing this with a neuro, though, okay? Going into a crisis and not knowing why (too much or too little) would be a nightmare if you run into a doctor in a hospital who doesn't know anything about MG. Would they know how to proceed?

I'm really sorry you're going through all of this, without sufficient help.

Annie

Welcome Beth!
Sorry to hear things are getting a bit more challenging - but really glad you are here. Lots of info, caring and sharing from fun, intelligent folks.