Doctors always do this knee jerk reaction thing, where their actions are all or nothing. Oy.

There's a happy medium with Mestinon, as I explained. If you become worse while off of Mestinon, call the neuro back right away. You don't need to go into a crisis of either kind (too much or not enough acetylcholine!).

Annie

Taking me off the pyridastigmine didn’t work, (I thought of you Annie, when he told me he was doing that&#128516, double vision came back, slurred speech, weakened facial muscles, etc. Anyway, he put me back on very low dose; 30mg, every 6 hours. I told him about taking less more often, but he didn’t do that for reason.

Doctors are human, and get scared.

60 mg. every 3 - 4 hours is sensible. Obviously you don't have enough acetylcholine, not too much.

He must not know of the very short life of Mestinon. Just tell him that Mestinon kicks in after 20 - 30 minutes. 2 hours after the 30-minute mark, Mestinon wears off. I don't even need to look at a clock to know when I need more!

This is the point where doctoring can be dangerous to MG patients. Hit them with gobs of steroids, expect that to work right away, decrease dosage of Mestinon, and hope for things to improve. Yeah, never works. Steroids can make someone worse before they are better.

I'm not a doctor, but I would give you IVIG again on a regular basis, up the Mestinon, and withdraw the steroids before your adrenal glands completely shut off (they don't need to work when a drug is doing that job for them!). Arrogant of me, right?

When are you going to Florida? I hope you will call the neuros there, and find a true MG expert. Be careful on the trip there. I wouldn't exactly call your symptoms "stable MG."

Good thing that you're smart! We need to be our best advocates while doctoring, even if doctors don't like that.


Annie

Thanks again for your insight and expertise! I think he took me off of it because I never noticed a difference in my symptoms after I took it, so he wanted to see if it was even working for me. Today, I didn’t talk to him, just received a message via the patient portal, so thought I’d try it today, then message him tomorrow.

Depending on how I am doing, we plan to go to Florida December 31st.
Again, thank you, you’ve been so helpful!