Hi there, I want to describe one of my problems which I'm not sure are caused by MG or not. Not that, if they're not they must be mental, but I wonder if I can help myself by getting mentally stronger and just needing to learn to do better.

It's about stimuli giving me more weakness.
MG is described as "use the muscle, tire the muscle". Use your arm and it will get weak. After rest it is strong again (I wish, but ok)
Besides this very obvious textbook MG weakness, I also get weakness from not so direct use of the muscles.
Example: listening to people talk. For some reason, it can wear me out. My face gets droopy if I listen attentively to someone. This seems strange, but it happens, even if I'm relaxing, not using my muscles much.

Party at my home, all the people and movement ant talk and laughter: I can relax and lay down all the time, doing less muscle-wise than I would when I was alone, but still it can't go on for too long and am extremely tired and weaker for a few days.

If I go somewhere, it always gives me a few days after where I am weaker. even with rest, my weakness doesn't decrease.

This all causes me some concern. Is normal for people with MG? Donyou recognise it?
I'm never sure if I better rest, or I'll better fight it?

Hope you are all well

[4-eyes]

All normal for MG. If I am in traffic and someone cuts me off or comes into my lane-instant weakness. I have guaranteed slurred speech at a party. Sporting events wear me out. I would be liquefied by the end of my daughter's swim meets from the excitement.

[Madalot]

You have described my situation to a "T"!! I have the same problems with going places or visiting with people. If a family member comes to visit for a few hours, I am weak and exhausted afterwards and it sometimes takes me a day or two to recover. When my daughter (who is high maintenance) is here for any length of time, I have to plan 2-3 days recovery.

Something else I've found, for me anyway, is that SLEEP is key to feeling my best. I need at least 8 hours SLEEP but 9 to 10 is better. If I have a bad night, my weakness the next day is 2-3x worse than on a good day.

It sounds like your situation is like a lot of us.

[ledeni]

Same here. One an retired neurologist tole me that in old time when diagnosis was not yet so advanced one of methods "confirming" MG was to provoke ear till it do not become tired, if it happens quickly then ...

What makes me annoyed is that i need to concentrate more more to understand what people what to say, and that they think i have other issues so they start to speak more and more, longer sentences ih hope maybe i got it

As a medicine i when i can i put headphones pretending i listen music just to give some silence (rest) to my ears, the ones who just want empty chat or to enjoy their own voice go and look for other victim.

Not nice i know but need to protect myself.

[ledeni]

Sorry for typos, my mestinon just started to work so i am correcting the post the blind mouse wrote (me with double vision which is not helping my disleksia)

Same here. Once an retired neurologist told me that in old times when diagnosis was not yet so advanced, one of the methods for "confirming" MG was to provoke ear till it do not become tired, if it happens quickly then ...

What makes me annoyed is that i need to concentrate more and more to understand what people want to say. usually they think i have other issues so they start to speak more and more, longer sentences in hope maybe i got it ... it newer works.

As a medicine, when i can, i put headphones pretending i listen music just to give some silence (rest) to my ears, the ones who just want empty chat or to enjoy their own voice go and look for other victim.

Not nice i know but need to protect myself.

Sorry for double post but needed to do some correction.

So it is probably connected to MG. You know, sometimes I wonder if there isn't a tiny bit of brain stuff involved. Whether the disease process itself, or the mestinon or whatever. Besides this weird phenomenon I described, there is also the constant fog.

I am never as sharp, cognitively strong, intelligent, as I was. Even at the best days (a few precious days after 5d ivig), I still feel like someone who isn't just 100% there you know. It's not like I feel stoned -not that I know how that feels like - I just feel foggy. Not totally awake. Like before the coffee, but I already had some.

If you recognise my first issue, how do you cope? Yes, rest after, but don't you too feel like it has a huge impact on your social life? Apart from the typical, "I can't talk, walk, have a facial expression" or the "I am always sooooooooooo tired". If you do something with other people, and it wears you out so much you can only take it for a very short amount and have to rest days after. How do you do that?
I am really bummed out, because I want to be more social, I always liked that, being around people and having fun. In another way it gives me energy (mentally), but fysically it just pushes me down hard.
I've lost many friends this way.

[ledeni]

Well you have a new friend MG and two of you need to learn to live in symbiosis. You push MG, you pay the price.

The friends whom you lost, they were the real ones ? Would not say so.

My real friends are still around me, some of them understanding changes i go trough, some of them not but all who remained respect my limits.

That is what made them friends, the ones who left are the ones who has some interest, now when i can not deliver anymore as i was .... they look for "better" friends. look it on the bright side, now you give all your energy to the ones who deserve it.

Regarding not being sharp, i had the same issue. You need to practice effectiveness & focus so that you can give your max (at least what you have/can).

MG push us to change the way how we approach the life, we need to adopt and take the max out of it.

[Stellatum]

I guess I'm not the only one! Yes, this is all very, very familiar.

I have wondered whether these situations make us unconsciously tense our muscles, very slightly--not even out of stress, but just alertness. We don't notice we're doing it, but it fatigues our muscles.

I almost always come out of a movie theater almost unable to walk, even if I go in feeling normal. I'm sitting in a comfortable chair the whole time. What could be tiring me? But if you pay attention, you'll notice that a film with any kind of drama will make you slightly tense all over your body. My best guess is that even that slight tensing is terrible for MG.

Abby

[limpy]

I have noticed this too. When I go out in public, especially to the doctor, where I have to be on my game, to make sure I remember all my issues , talk more than usual, and listen carefully.
I become much weaker and it especially affects my facial muscles and speaking more so than if I were at home. My doctor does not believe that my treatment is working because I do not appear to him to be as improved in his presence as I am at home.
Acetylcholine also crosses the synapses in the brain. It would make sense to me that if one was unable to produce enough acetylcholine, as in the case of LEMS, or unable to receive it properly, as in MG, that the processes in the brain could be adversely affected and then, in turn, cause muscle deficits, similar to if one was trying to do multiple physical tasks at the same time.

Quote from article on acetylcholine on Wikipedia:
"Inside the brain acetylcholine functions as a neuromodulator—a chemical that alters the way other brain structures process information rather than a chemical used to transmit information from point to point. The brain contains a number of cholinergic areas, each with distinct functions. They play an important role in arousal, attention, and motivation."
Just a thought but makes sense to me.

[juliejayne]

You have to also consider that you have a lot of muscles. OK the ones that affect us the most are the big obvious ones. But in a social situation, no matter what you are listening, looking talking moving (even if slowly) and all of these activities use muscles. And they can all be fatigued.