Some quotes;

Brennon; It is a quick acting medication, you'll know within 15-30 minutes if it is working or not"

Suev; "immediate improvement in my ptosis and duration of muscle duration"

StephC; great neuro started me on 60 mg every 2-3 hours as tolerable up to 6 per day and it has helped wonders"

I am pretty much the opposite. I am just wondering if there is anybody like me? I have never had any remarkable results shortly after taking mestinon. I may feel a little bit better after one dose but never after every daily dose. I take 60 mg 5 x a day.

Any side effects I may have are minimal.

Scrubbs

Count me in the "Mestinon doesn't do much" crowd. I am subject to spells of intense weakness that last about an hour. Mestinon does nothing to prevent or abort them. In addition, I have general mild weakness throughout the day. Mestinon seems to help this somewhat--not really enough that I'm totally convinced it's working--but if I take it regularly, after about a week my left eye hurts. None of my doctors think this makes sense, but it's very regular. So I take 30mg. now and then, like if I'm going somewhere tiring.

As for other side-effects, I have no stomach upset or diarrhea. While I was taking higher doses (60mg. every three hours) I used to get painless muscle twitches and my mouth would water.

I am still doing much better on the Imuran, though I went on a camping trip (just two days) with my family, and that set me back. But I seem to be snapping back to the pre-camping state. I tire easily, and feel the weakness in my arms and neck, but no more of those intense spells.

Abby

If this illness made me feel that I have fallen into the rabbit hole, then mestinon made me feel that I did so while riding a roller coaster.

If MG was unpredictable the effect of mestinon on me was even more unpredictable. It could go from significant improvement, to no change to severe weakness. It would also cause fasiculations in a similar unpredictable manner.

At some point I stopped responding to it.

I do much better with a low dose of mytlease, which together with salbutamol leads to mild constant improvement.

MG is not one disease and therefore there is a different response to treatment.

So how can we know that the tiredness is caused by the MG and not by the mestinon? As for me, I have had more generalized symptoms since I have been on it, but if I don't take it, I get even worse.

To me, tiredness and muscle fatigue seem like two differant things. I think.

If you are taking your Mestinon as prescribed and you get out of bed one day and able to walk around the block and then the next day you know you are not going to make it so you get three houses away so you turn around and go home is that because your muscles are more tired or fatigued?

If you are sitting in your chair and you go into crisis, is that your diaphragm gotten tired or fatiqued?

I know Webster would define them the same but to us it might be called something besides tiredness or muscle fatigue when our muscles just shut down. I wish I knew.

scrubbs

I tend to think they are two different things too.

To me, muscle fatigue is that my muscles cannot work. They totally malfunction. They don't feel any problem. They just don't work.

Muscle tiredness is an aching, bad feeling, hard to make it work, but it does.

For example, my right eye closes so severely without mestinon that I can't see out. It doesn't feel like anything. If it is only halfway closed, I can't tell it without a mirror.

People ask me if my eye feels tired. Well it doesn't. It feels normal. It is just not normal.

I found this little video on King Koil's Website. Not really sure how they expected it to sell mattresses, but I found it interesting. Basically an neurologist talking about the difference between sleepiness and fatigue in Myasthenia Gravis. There might have been more a little more info on King Koil's Website but my bookmark to to the Youtube video.

http://www.youtube.com/watch?v=jNRaV...ayer_embedded#!

What word to use to describe what you are experiencing is semantics.

The problem is that when you talk with someone who has experienced something similar they can easily understand what you mean, regardless of the words you use. But, when you talk to someone who has not experienced something similar it is important not to use words which may be ambiguous.

I have learned not to use the word "tired" of even "fatigue" to describe my MG symptoms, because those words are being used in everyday language with a very different meaning. Instead, I give an exact description of what I am experiencing (sometimes with pictures if required which are easy to obtain with a cell-phone).

When I show a set of pictures of me with my respirator and then gradually recovering and eventually able to smile a normal smile, after trying to swim a few meters and then slowly get out of the pool, it's enough.

When I say that after I move my arm up and down a few times I can't move it at all and it becomes nearly paralyzed and then I can move it again after 10 minutes of rest, it gives a clear picture.

When people ask me why I am so sad, and I say that I am not and it is just my muscles which can't create a smile and my eyes which are drooping that create this impression, they fully understand.

When I use words like tired or fatigued, they say-yes I know what you mean I too am so tired after a day at the clinic. But, a cup of coffee makes me feel much better. Maybe you should try that?

You have to learn the pattern of your own illness. It takes time and I don't think there are any short cuts.
In the early days of my illness, I didn't know.
It took me a long time to confident enough in what I am experiencing that I didn't need anything (or anyone) to verify it.

I wonder if I don't have 2 things going on.

1. The myesthenia gravis causing the muscle disfunction.

2. My blood pressure medication making me tired.