This sounds exactly like what is going on with me. It is all the time and all over my body, not just in a particular place when those particular muscles are tired - though it does seem to get worse if I've been doing something. If I've just been lying down, it's like a low hum inside of me. I've been trying to figure out if something precipitates the tremors and trembling but I can't figure it out. It seems to be rather random while the internal shaking is constant. I daresay it makes me feel better just knowing that this isn't something completely unheard of. I was nervous because it really does seem like it's counter to what is supposed to be going on with MG and my diagnosis is still not yet completely firm (still 98% certain). I kept thinking maybe it meant that it was something other than MG. I might just be trying very hard to be in denial but I'm having trouble convincing myself that I'm okay.
And don't worry - I had no idea you were in a mental fog until you mentioned it. You were very clear with your words and I appreciate it a great deal. I'm not sure where you are but if you are in one of the blizzard states in the US it might be the weather affecting you adversely. I'm new to all of this but even at this point I know that extreme weather - hot or cold - tends to affect me adversely. Right now I feel stupid and fevered and there's a few feet of snow piling up outside. I think there's a connection. Could be the same for you.
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Originally Posted by DesertFlower
I, too, have this vibration-like feeling inside, especially when I first started MG sympoms. (My doctor said that this vibration/tingly feeling didn't fit in with my other MG symptoms and made him initially question his diagnosis).
The vibration/tingly feeling was constant for me (although the location in my body varied) until I started to take Mestinon.
I don't know if this is true, but it seems like the vibration sensation is my body sending out antibodies because after I get vibrations then I get weakness in nearby muscles. I can actually feel it travelling in my body, going outward to hands/feet/face.
Now that I have my MG mostly under control, I only get the vibration feeling when I get stressed, if I am too active, or if I have waited too long to take my next Mestinon dose. Almost always I get these strange sensations before I get increased weakness - I KNOW the two are related somehow.
The twitches and shaking happens occasionally to me too, but not so much since I have found the best Mestinon dosage and learned to limit my activities and stress.
The strangest MG related vibration/tingly feeling I have had is when it is in my face...it almost feels like something is crawling under my skin. And I always get double vision afterwards. Often this includes one side of my face droopy and the other side tense with a raised eyebrow. I hate it when that happens! This is my usual response to stress - it makes me angry that I can't handle stressful situations.
Mestinon helps with this vibration, but can make the twitching and shaking worse.
I hope this makes sense and is helpful. I don't seem to be thinking clearly today and I feel like I am in a fog, my short term memory is not working so great.
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