[Anacrusis]

Hello everyone

I made some notes after having taken small doses of Mestinon for one week. Is this how it feels to take Mestinon or am I way off the mark here?!!

Deltoids:
Before taking Mestinon I can manage only 8 arm lifts to the sides before reaching that feeling of complete and utter ´myasthenic extinction´ in the deltoid muscles. And quite often my arms feel just like heavy garden spades when doing any work above/away from body.
After taking Mestinon (15mg) my arms are more like feather dusters and I can manage 35 arm lifts without too much trouble. The feeling of a sudden severe energy crash is then slowed down and feels more vague.

Eye muscles:
The maximum effect happens quicker with the eye muscles than the deltoids. Long distance vision is sharpened and also focusing on objects close up is improved by about 20 cm. This effect lasts about 1.5 hours and then wears off. (These results however can also fluctuate)

Are there other things I should be looking out for/noting down?

Thanks much

Anacrusis

[southblues]

It sounds like it is doing a lot. If you are on only 15 mg, you could probably get more benefit out of a higher dosage.

[Anacrusis]

I´m thinking it sounds like a really stupid question, but I really needed to get some objectivity on my findings from an intelligent myasthenic mestinon user! Thanks Southblues!

It´s hard not having a neurologist. My doc prescribed it for me and he knows nothing about MG or medication……..YET!!!!

Just like you, I had lots of negative tests & many errands to the opticians! I had to negotiate with my employer for part time work since my lack of diagnosis would not allow me any paid sick leave. My energy just can´t get me through a 100% job any more. Admittedly my symptoms are quite tame at the moment but if I ever get another severe flare up in the future then I would hopefully know exactly which treatment to turn to. So in my case Mestinon might end up having more than just one job.

Nice to meet you and read your interesting posts


Anacrusis

[suev]

Yep - - sounds like your body is responding well to Mestinon!! Congrats!

I started out with 15 mg (every 4 hours) ...that was three years ago. Now I'm more in tune to what my body's telling me...and I worked my way up to taking more (with doc on board).

If you do make any adjustments, you have the option of changing either frequency or dosage amount - - but don't do both at the same time. Of course don't make any adjustments without your doc's approval....just make sure you stick with one level and time frequency for at least a week - while you monitor how your body handles it under different conditions.

And don't be concerned if you don't respond the same way each day. That's part of the puzzle we get to work with!!

[Anacrusis]

Originally Posted by suev

And don't be concerned if you don't respond the same way each day. That's part of the puzzle we get to work with!!

Thanks much suev

Although I was really quite surprised by it´s positive effects, it was also very confusing to get fluctuating results on top of so many already fluctuating symptoms!

Anacrusis

[Anacrusis]

Originally Posted by suev

..and I worked my way up to taking more (with doc on board).

By the way suev.....I might benefit from a little more Mestinon for certain muscles but a higher dose than 15mg in my eye muscles and I´m pretty sure I´m gonna develop binoculars!!!!!

I wonder if this drug´s action ´tops up´ where it´s needed or if it can´t distinguish those areas and therefore some myasthenic muscles which are having a good day end up getting over medicated