A lot of talk about mestinon lately.
 

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'm on the boat that Mestinon does nothing to very little (3x60 plus 180 time release) also IVIG does nothing to very little except for the bruises on my arms.
Mike

Celeste;

I think it's great that your ptosis goes away with Mestinon and that so many people here also see immediate remarkable results right after taking it.

I was just wondering if there were people out there like me. Not too many it seems.

scrubbs

There is still a tiny bit of ptosis there, but it is radically better with the drug.

Mestinon didn't do anything for me- except cause me to go into a crisis when I was accidentally overdosed by a very well meaning, but in-over-his-head neurologist. My new neurologist has explained that it is important to know if you are you are antibody+ and the type of antibody+ because if you are NOT than Mestinon/IVIG/Plasmapheresis may not always work- and only certain treatments work for certain positive profiles. (I am negative for all three and currently giving IVIG a last shot anyway).

Scrubbs-you brought up a very interesting point about the diaphragm. I always associate my limbs/eye muscles with being fatigued- AKA no big deal- I just overdid it and I can push through it with a good night's sleep and by taking it easy. Recently though I think some of my "involuntary muscles" have been weak- and more than just the typical bulbar muscles, which are always pretty crummy.

My appetite has been really bad and my GI told me he thinks my stomach is so weak that it cannot properly digest hence it takes me much longer to digest and I am losing weight and not hungry (I can feel like I overate for 12-14 hours after a small meal). I am also down to 105lbs (I'm 5'2"). Also my wonderful nurse who administers the IVIG has noticed that when we infuse in the morning my blood pressure is pretty normal but every time we infuse at night it is very low. She is beginning to believe that my heart might not be pumping as well at night and that may be adding to my general feeling of being physically exhausted.

Has anyone experienced things like this?