what a great thread.

I have just copied something I wrote a while ago, about this magical, two-sided, frustrating, confusing and indespensible medication for me.

by the way, I found neostigmine injections much better and more predictable when I am doing really bad. (eg-having both breathing and swallowing difficulties that make it hard to breath even with my respirator). it also works really fast (within 5 minutes).

Mestinon:

Mestinon or pyridostigmine is the medication myasthenic patients use in order to increase the amount of acetyl-choline in the synapse, and thus improve the transmission in the neuromuscular junction. This form of treatment was discovered by Marry Walker, who was an ambitious woman physician, who realized that she could use a pesticide that inhibits the enzyme responsible for the destruction of acetyl choline.
At some point I wrote a poem, describing my appreciation and gratitude for her innovative idea.

Marry Walker,

I can vision your foot steps as you so swiftly walk,
Thinking,how to help your patient that can hardly even talk.
How to help your patient that is lying there in bed,
I am sure you feel frustrated and really want to understand,
You think who you could consult; you think who you could ask,
But you realize there is no one to accomplish such a task.

And then, this bright idea comes suddenly into your head,
You stop right where you are and you think you understand.
An injection is then given to the patient in the bed
That nice young lady, that can hardly move her head.
And when you watch the movie, courtesy of "roche"
As the prostigmine goes to were it should approach

You see how within minutes, that patient that looked so sad,
Gets up and moves around, and looks so very glad.
You see how within an hour she gets up to the door,
And then can you believe it, even mops the floor.

I wonder if you thought that some time in the future, not so very far
There will be another woman physician, as ambitious as you are.
That will be able to take care of her patients, and find answers to her questions,
And all thanks to your innovation?


But, very early on, I also realized that for some unexplained reason, mestinon for me was a two-sided sword. None of the neurologists I consulted about it, was able to give me any reasonable explanation for this, in fact they mostly made me feel that I was not taking it properly and something was wrong with me. how could it be that a competent physician, can not find the way to balance her own medication properly?
Taking mestinon when I had clear symptoms, such as diplopia, significant weakness of my arms or legs, swallowing difficulties or shortness of breath, combined with a significant reduction in the level of my activity would almost always help to some degree (sometimes even dramatically to the extent of "popeye and the spinach"), this would also be seen in my respiratory tests such as MIP/MEP. The effect clearly being much more significant then by resting alone.
But if I would try to take mestinon instead of resting, and contine at the same pace, thinking that the mestinon "will take care of it", most of the times it would have the opposite effect and actually make my symptoms worse. But even then if I took another mestinon and went to rest I would experience improvement.
Whenever I tried to stop taking mestinon all together for more then a few days, it lead to an overall worsening of my symptoms. This difference was so obvious to me, as well as those around me, that the head of my department would ask me if I was doing experimental medicine again, and tried stopping my mestinon...


alice