Thank you SO much, Annie.
I did ask if I didn't need a little bit of Atropine, but they said no.
The doc himself did think he knew what he was doing.
But I guess they didn't really get, just how awful I felt.

Days after, I still had issues. Intense muscle pains f.e. And of course, a total MG blow, so a few days 100% bed and liquid food once more for me.

Why Benadryl, it's an antihistamine I believe? I know some of those can make you tired, but does this one affect the muscles? (no, I will not randomly take anything without discussing with my doc, but I am curious how this works)

I think that benedryl has some anticholinergic properties. So it would make MG worse and a cholinergic crisis better. I think.

Celeste is right.

http://pharm09.wikispaces.com/Cholin...ticholinergics

Its tricky to use Benadryl if you don't know how it affects you, because it could make MG worse. I use liquid Benadryl (for allergies) because I can take the smallest amount possible.

I'm sorry you got so bad afterwards. I get that way after having Atropine drops for an eye appt.

Talk to your neuro instead of leaving this stuff in the hands of an ER doc who might not "get" MG!

Annie

I am super sensitive to Benadryl. When I had an allergic reaction to rituxan infusion they gave me 50mg IV and it fixed my allergic reaction, but I could not move my limbs or even speak for a while.

Oh my, that's so stupid if you think of it.
You get a disease, and start with a treatment A.
The treatment A gives a reaction, treated with another treatment B.
And B makes your disease worse.

Anyway, thanks y'all for this information. I will ask my doc (a true neurologist) what to do in the future.

I have taken Benadryl for allergies. Maybe I need to ask my Nuro, but have never had a problem. I sometimes take 1 or 2 a day of the over counter Benadryl. I will ask as soon as possible.
Thanks
FREDH

I stopped taking the pre-med benadryl for IVIG and felt much better this time.

kathie

Interesting.I got on this forum today because yesterday I accidentally took two mestinon tablets very close together. However, I felt stronger than ever. Now I am wondering if I should ask for more mestinon. I have been so grateful for the increase in strength, but now I wonder what the limits are. Do you just keep increasing mestinon until you start feeling weaker instead of stronger?

There is a limit which most doctor feel is safe and do not have to worry too much about cholinergistic crisis. I think I read somewhere about 540 per day seemed a max safe number. I was up to 660 a day and my neuro did not want to go any higher and ordered IVIG. After IVIG I was able to decrease mestinon again. Many on this site take higher doses which I think are more carefully monitored to ensure they can safely take it. It all depends on how severe the MG and how well you tolerate Mestinon and how well it improved you. I would not play around too much with the dose without talking to your neuro.


kathie

My doctor says there is no upper limit for Mestinon. I take 13 to 18 per day with a Timespan at night. As you can see my dosage varies quite a bit.