Hi there, I'm anxious to feel better again. I've had flare ups or even crisis' before, but most of them were more controlled by medication in the hospitalm and I felt less paralized, useless and desperate within a month or so. This time it was not treated with any medicine besides the ones I'm taking already.

Yes, I am out of the dangerzone and home. But it's been months and I still haven't returnedto my old level.
And, frankly, I am scared. Is it normal for a flare up / crisis to linger on for months after?

I'm only one data point, but after my last flare it took a few months before I was back to "normal". I too stuck to my usual list of medications (Mestinon, Prednison, IVIg) in my recovery.

It might be time for an internist or some other doctor to consider if something else is contributing to your MG being worse.

How much are you doing every day?

Are you taking Mestinon? What other drugs? Sometimes when you're on other drugs for MG, Mestinon can be causing you to have too much acetylcholine. But only your neuro and you can figure that out.

I'm very sorry that you aren't getting better. It could just be a matter of it taking longer this time. If I recall, you were pretty bad off, so maybe it will take backing off on activities in order to bounce back.

It's frustrating to be so weak. I hope your docs can figure something out for you!


Annie

Thank you! I needed that. I was used to going back to "normal" much sooner, so this kind of scares me. Even after full crisis periods.
Granted, those times they filled me with a whole lot of medications so maybe that's just it.

Annie, thanks again for amswering.
Yes, well, about that: I've seen too many docs already and am just tired.
I was in the hospital, mostly because of my oxygen level, and they did some tests to figure out what caused yet another flare up.
I take mestinon and a whole bunch of others, but that doesn't seem to be the cause.

I dunno, just feeling a bit mixed up you know. I am so tired, and there's this nagging feeling that something just isn't right. In the long run it al seems to get progressively worse and it makes me anxious. Guess it has simething to do with my other diseases, but none of my docs seem to really give me the blunt answers I need.

Annie, I have a couple questions about small crisis or bouncing back. I am on the tapering back on prednisone for the respiratory issues I'm having. When I went from 40 to 30 the cough came back now at 15 MG for 3 days etc. basically back like I was. Tried to reach doctor Thursday and Friday with no luck which I will address Monday. His staff is still not communicating to him. When do you know the hospital is where you need to be? Also have you heard of ringing in ears at times while on Mestonin, Mestinon times span and prednisone?
Thanks for any input.

Annie, I have a couple questions about small crisis or bouncing back. I am on the tapering back on prednisone for the respiratory issues I'm having. When I went from 40 to 30 the cough came back now at 15 MG for 3 days etc. basically back like I was. Tried to reach doctor Thursday and Friday with no luck which I will address Monday. His staff is still not communicating to him. When do you know the hospital is where you need to be? Also have you heard of ringing in ears at times while on Mestonin, Mestinon times span and prednisone?
Thanks for any input.