mestinon question
 

Hello,

does any one feel that mestinon is really 'used up' during activity? Normally if I do something (like walking a flight of stairs) that makes my muscles weakness worse I recover in about 10 minutes to the level I had before starting the activity. However if I am active for a more prolonged time I don't recover until my next dose.

Another question: does you muscle weakness always get to the point you are not able to use your muscles at all? I get that sometimes in some muscles (althought I'm never 'totaly paralyzed' or something, just not able to lift my arms to put the next peace of clothing on the washing line for instance). But I have always been able to walk. Sometimes only with my knees overstretched an kind a duck like due to weak pelvic girdle muscles an weak thigh muscles. But I hardly ever get to the point were I fall. Only sometimes, mainly in the past I did. For instance my legs giving way after getting of my bike, or my legs giving way when trying to get into a bus after walking to the bus stop. I think I may have learned how to do that without falling, because I move in strange ways sometimes?

I am not sure if it is the mestinon used up. It is more like the muscle is used up and then only rest helps and ice. I have had several falsl related to the fact that my legs just would not move. Once I could not move my arms and all I did was carry in the groceries. The muscle was nearly paralyzed, it will only make the slightest movement and not in the way directed.

kathie

The mestinon only keeps the acetylcholine that your body has available for a little longer. If you totally use it up, it is gone and you go all weak. Mestinon can prop you up, but it does not cause you to produce more acetycholine or make you have more receptors. Regardless of treatment, we still have a ball and chain to drag around.

Mestinon
 

There was a neurologist, I believe, from British Columbia, who was "famous" for a comment that went something like, "Mestinon is about as effective in myasthenia gravis as an aspirin is for a brain tumour!"

What he is saying is that Mestinon does not, and cannot control the number of antibodies that our bodies send out. Science isn't positive about what is responsible for that either.

Nor is Mestinon selective. It can't zero in on only weakened muscles, which is why you might feel some muscle twitches in your face (too much?) for example, but it appears to be helping your left arm. This is one of the reasons why, less is more. If we keep taking more and more because we believe it isn't working for a specific area, we could end up in the hospital in "Cholinergic Crisis" which many, many hospital visits are all about.

What is a cholinergic crisis??? I am so new to this and feel so uneducated.

Hello Mastas :) A cholinergic crisis is way-y-y too much mestinon. Sometimes, it's difficult to differentiate between that and an MG crisis because the symptoms are very similar. Usually, a patient is observed in hospital, and may be given assistance while the effects of the drug wears off.

Learning about MG can take a very long time, sometimes, a few years. It will seem complicated at first, but the more you learn, the more the pieces will fit. We are all different, and so are our experiences but there is sort of a base for all of it. Keep reading, and never stop asking questions. I believe we should know the best and worst case scenarios--knowledge is powerful.

Thanks...I actually googled it after asking you.... Urg...something I had never heard of and still don't totally understand. I take mestinon every 3 hrs and that somewhat scared me.... Thanks!!!!

Mastas
 

You don't have to worry about mestinon build-up. If you do well every 3 hours, then continue as it does not build -up, it is gone when the next dose is due.
I do every 4 hours, but soon need to do a little more, as i still have weak left eyelid.
Fredh