Myasthenia Gravis Support Group
Myasthenia gravis (MG) is a neuromuscular disease leading to fluctuating muscle weakness and fatiguability. The hallmark of myasthenia gravis is muscle weakness that increases during periods of activity and improves after periods of rest. Although myasthenia gravis may affect any voluntary muscle, muscles that control eye and eyelid movement, facial expression, and...
Hello. I have a new concern. I have felt bad a lot of the day today. I just layed down and I am feeling a lot of muscles moving in my stomach, thighs, chest and face. Like flutters or worm movement, sorry idk how to explain it. Does anyone have any idea about this? Thank you. I do hope yal have a great weedend.
Before I was treated for MG, I used to have a sort of twitching under my skin. For me the twitching was mostly in my arms and would appear when I was recovering from a flare during which which my arms had been weak and achy. I always regarded the twitching as something positive -- it was as if my nerves were regenerating. I showed my neurologist the video I made, and she said that my twitching under the skin was myokymia. It's been at least a year since I last experienced it. I take Mestinon, azathioprine/Imuran, and Prednisone.
Your neurologist is the one to decide what yours is -- it might be something else, separate from or associated with MG.
If it's any consolation, today I too am having one of those crummy days.
- Nan
Venting is fine when you have MG!
Thank you again.
this is a consecuense of our mg. in some it is minimal in some as me the muacles realt take a beating,
with time gouing by, our muscles tend to loose masses and strenght, and i have seen in me that my muscles have lost most of their shape, they are week , as they have expose all tendons and nerves junction thus causing pain, cramping and other malaise, but i dont let this get under my skin.
i know that i have to make myself excersice with out excertion, i make myself walk 45' dayli,
and beleive it or not we need to replenish electrolites as they deplete so i drink 2 quarts of them dayli, and belive me it does help, i am able to move more free then before
best of luck Andre
i never tought about them untill my wife told and show me my arms where wrinkle to no end, then i made to conjuction of the electrlytes, normaly i use to drink water, but that on itself is not the best as to much wtaer will deplete you of your flora.
as for the electrlytes i drink POWERAGE (ion4 advance electrolytes system)
it is made by coca colaa and found in all super markets, the cost about .99 cents a bottle of 32oz
i try all tests, and found the the lemon/lime is the most tolerable, but every body may have a different test buds
as i said before, i drink 3 quarts dayli, i beleive this is my requirement, and you will see the results pretty fast
best of luck Andre
i tend to disagree with the prior statments, crampes come because the neuros response is scrambled because of mg, not because major dose of mestidone, since mestidone is to control mg.
since 2011, after 5 months of high doses of mestidone i was under control and at the lowest dose prescribed 30mgs dayli
they are two type of cramps under mg, that i can describe, since i am generalize bulbar 4 patient
1) cramps happening dayli or others where neuros faill to respond
2) cramps that happen at night or day when sitting laying down
the first are entirely do to mg.
the seconds described even that they are under mg, form part of having lost mass of the muscles, torso,legs,arms.
as the mass dissapear all the tendons nerves get expose under the skin and when you turn and turn laying down at night, the rubbing activate cramping.
also that happens sitting, chair, couch, or reclining chair
for that i have discovered thank to my wife that i was getting dried out and was wrinking, so i since the take 2 quarts of electrolytes and that has seems to help greatly
for the regular cramps and pain, i am using a tensil machine to relax the nerves and tendon, ofr about 15minute dayli when that happen, then i am ready to take a walk of about 45minutes
the tesil machine is a hand held, and found on drug stores for about $30 to 80 dollars
under that view i can say for certain that these fact are a certainty, my neuro afyer my dissertetion of happening agree totaly with me and told me to try, since then i am in full control of these happening.
my arms even that they are flobby, are not dried out as before and my activities are getting better even, that i am carefull not to overdue
logic and cummun sence will allways help to search beetwen these laberinths, that mg trow at us
best of luck Andre
I have also started retaining fluid again. I have no idea why. It's not meds because I was doing this before any meds, about 5 years ago.
Google: 'mestinon and muscle cramps'
there are more than enough references to make the point that Mestinon is indeed associated with muscle cramps. The 'good' thing about this being that higher doses of Mestinon are usually only short-term and there is no real need to go in search of additional medication / treatment. Having said that, I note that you only seem to be taking Mestinon which I don't think can fairly be described as controlling MG. It does no such thing, in fact it extends the time the muscle junctions are active and I would suggest that one of the outcomes of that is the potential for muscle twitches / cramps?
It's also worth noting that Mestinon is in no way a targeted drug when used for treatment of MG - we take it and it equally affects all our muscle junctions, regardless of whether or not there is a problem - cause and effect or even the law of untended consequences? Therein lies one of the problems with MG and our current treatment. Is it any wonder we have side effects and especially so when we take too much?