Hi limpnoodle,

Thanks so much for your reply. Did you try 180 mg mestinon retard? You can also divide it as 90 mg. But duration is longer than mestinon 60 mg. Maybe this can decrease the number of times you take mestinon.

May I ask, why do you need timespan while you are sleeping at night? Do you think it has an positive effect for the next day? Or do you have sleeping or breathing problems?

Don't have mestinon retard here that I know of. I just googled it, and apparently in other countries, it is the equivalent of mestinon timespan.
It doesn't bother me to take it as often as I do, because I have to take many small doses of both drugs to keep a stable balance in my screwed up body. When I took mestinon only, I had to do this to keep from getting the wild swings in strength and weakness. I also have very minimal side effects if taken this way.
Most people can take dap every four hours, but mine is used up in two. Mestinon is the same way. I metabolize most drugs very quickly.

I was taking timespan during the day, when mestinon was my only drug, but had to switch back to regular mestinon when dap was added because the side effects were really intense with dap and timespan taken together. I stop tge dap two hours before I take tge timespan.
The timespan is because I have serious breathing problems when I go to sleep. I am on cpap and oxygen at night. This is what works for me, but obviously we are all different in our needs for, and reactions to drugs.

I have the problem of internal fatigue. I can stand up about 10 seconds, then I have to sit down, if do sit down for a long time, then I feel the fatigue again. In Myasthenia Gravis, muscle weakness/ fatigue occur. In the time when I take Mestinon or Mestinon Retard, my muscular energy is rather good. But Mestinon does not decrease the internal fatigue, it only increases my muscle energy. Do you experience the same thing? I mean, when you take Mestinon, does your muscle energy increase but is your internal fatigue not affected and cannot you walk owing to this internal fatigue?

I am not talking about feeling a little fatigue, this is a severe fatigue which causes you to sit down immediately after a walk for 10 15 meters. I did not use to have such a fatigue, I was able to walk for a kilometer. It has increased in recent years but my muscle energy has not decreased.

I would like to bring your attention especially to this: what I talk about is not muscle weakness, it is severe internal fatigue. You can think it as the fatigue felt by a healthy person after a fast run for 1 2 kilometers. I mean when I stand up, I have 10 seconds in order to sit down. I can walk for 10 15 meters because of this internal fatigue and then I have to sit down but my muscle energy is good.

For 8 months, I used oxygen supply through mask half an hour a day at 4 liter/h, about 30 mins, not at night, only daytime. First days, a little energy came up but not enough to increase my standing time period. Since this energy increase did not continue, I stopped using oxygen mask.

I also underwent sleep tests 3 times, one at home, two in the hospital. At first sleep test I could not sleep at all. At second test, I slept for about 2 hours and test revealed two central apnea with duration of 20 seconds per/apnea. Sleep test at home revealed 4 hours of sleep and 4 apnea. That means I have only one apnea per one hour. Doctors evaluate 5 or more apnea per hour as a problem. Do you also have central sleep apnea? What is your values? How much central apnea and what its duration? Nevertheless I used CPAP and BPAP equipments, but their pressure hurt my lungs and caused extra systoles. Using CPAP was very hard for me. I could not get used to it.

I take a timespan PLUS a 60 mg tablet of mestonin when I wake up, then I'll take one or two more 60 mg tabs towards the end of the day (at least a couple hours apart)

I also take 2000 mg of cellcept daily

I also take prednisone that I'm trying to wean off. Right now I'm trying a 20 mg prednisone on Mon, Wed and Fri and no prednisone on Tues, Thurs, Sat or Sun.

I have the internal fatigue also. I cannot stand or sit upright for very long, till I have to get in a reclining position. I have come to believe it is my core muscles that are weak along with my arms legs and neck. Really everything is weak.
I am currently on a round of plasmapheresis and feeling somewhat stronger after three treatments. Two more to go.
I use cpap and oxygen at night. I have obstructive sleep apnea. Even when I get a little drowsy, my throat muscles relax and throat closes off waking me repeatedly.
The hard part about cpap is finding the right mask. I found mine, finally, and sleep peacefully with it. Dry mouth wakes me up most now.
Bipap made my lungs feel like they would explode. They put it on me in ICU and I had to tear it off because I could not keep the pace with the machine. When I get weak, I find it very difficult to breathe out. The cpap I use relaxes between breaths, called c flex, so that one can exhale without undue pressure. I would not be able to breathe out if the pressure were not reduced to allow for this.