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Originally Posted by CaliCastaway
Okay, long story short, I've been having muscle weakness consistently for almost 4 months now, had it off and on for the last 2 years. Trouble chewing, lifting arms to wash hair, brush hair, teeth, do my makeup, even holding my neck up sometimes, sitting up at times, going up stairs, activities in general at the end of the day when I am excessively fatigued, etc. Also a lot of shortness of breath, lately it's been terrible--to the point my chest just aches. Diplopia--for about 2 months my left eyelid drooped a bit, not too bad, but enough I could notice, still does rarely now and then. My PCP did an MG blood test that came back negative, the neuro she referred me to suggested maybe it would be MG, but with a negative test (and he wouldn't run the MuSK test) it was unlikely, though suggested a trial of Mestinon to rule it out. He has me on 60 mg 4x a day--from everything I read, is that a lot? It just seems like such a high dose from everything I've seen. And how quickly would I 'feel' better, genuinely, if it was going to work and if I had the MG? I started today, have done 3 doses and I have noticed a couple routine things that normally are terrors for me to do are easier, even a general lifting, easier feeling of moving in general and esp. my breathing feels easier; though at the same time, not everything is easier, and at times i almost feel a little weaker? (though I read that perhaps if a person is on too much that may cause extra weakness?) Though, that weakness feels different than this weakness I have been putting up with for so long in my jaw and arms and knees and everything else, feels more like a veil over me in general, kind of odd...
SO...I am just confused as to how exactly to recognize what a successful trial will feel like, what counts as enough to be working (and not just me being hopeful ona good day)? And does the Mestinon build up over time as you take it, do you gradually see more and more results over time as you take it and feel more and more effects over time or is what I would feel this week be the extent of how that would feel? I would assume it would help. I just don't know much about this stuff and my neuro wasn't overly helpful as he seemed very skeptical of me having this. I also have Graves' Disease and seronegative Rheumatoid Arthritis, and interstitial cystitis.
Any help or suggestions would be greatly appreciated! I am so lost and confused.   |
This is very similar to my own situation. All my tests came back negative. My neuro tried Mestinon. The initial dose was 30mg every 4 hours. Within an hour of the first dose there was a remarkable improvement in my walking and my tendency to strangle on saliva or liquids disappeared almost entirely. I am now on 60mg every 4 hours and sometimes I take an extra tablet in between doses if I am going to be more active than usual. These "extra" tablets are done WITH my doctor's permission and not on a routine basis. I would definitely not advise you to try anything like that without consulting with your doctor first.
From what I have gathered on this forum and from other sites on the internet 60mg every four hours is a pretty "standard" dose.
Mestinon does not "build up" in your system. Its effects only last a couple of hours, thus the frequent doses.
If Mestinon is working for you I don't think there will be any doubt. It isn't a cure though. It sounds to me from what you say that there is a definite improvement for you! Good luck!