Who has muscle twitches?? Please respond!
 

I'm new here, my neuro said that she's 99% sure I have MG. waiting for blood test results.. Who has muscle twitches & how often?? I have droopy eyelid & tiredness issues and had a horribly weak neck for a month But I'm just kinda afraid & want your opinion while I wait.. Any comments appreciated! Thanks!

I am not diagnosed with MG (though every muscle is weak and i have droopy eyelids, double vision etc.. esp with heat and at the end of the day).. I have a diagnosis of CIDP, though it is atypical.. I have twitched for 4 years, never thought twice about it until i got weak all over, then i was officially freaked out! every single muscle in my body twitches, though the IVIG helps tremendously with that . good luck!

I have had some muscle twitches for sure. I am seronegative, but my doctor is sure that it is MG.
So if he is right, I have it.

I am not yet confirmed via testing but believed to have MG. I have had twitches mostly in lower legs for at least 6 years

Dang. Everything that goes wrong with me seems to be MG related.

Why are you guys all undiagnosed??? Is the testing not so clear??

I'm a twitcher too!
 

I'm seronegative, though my neurologist is confident that I have MG. My twitching/fasciculations occur mostly in my legs and seem to be more prominent when my legs are fatigued. My neurologist can't really explain why it happens but thinks that it is related to the myasthenia.

Mestinon will make the twitching worse; my twitching started about a year after my other symptoms (double vision, weakness) started. I didn't start taking mestinon until about 6 years after the twitching started.

Cate

Hmmmm, I don't have double vision, I just have crappy vision!! The heat makes me wanna sleep & I can't take hot showers for very long at all, I have passed completely out on 5 occasions. Now I've leaned to open the door & cool the water down. But that has only been in the shower. I can still do everything, other than being tired & that my eye is droopy & occasional weakness in a localized spot you wouldn't think anything is wrong with me other than I complain about it!! I guess I've had some sensory issues but that's about it..

I have just been diagnosed by my Neurologist at Shands, though all my tests were negative. He put me on Mestinon and that has greatly improved my conditions, though it still wears off just before taking the next pill. He increased it to my taking 90 mg ever 4 hours. Seeing him again next Wednesday.

Yes, have muscle twitching, droopy eyelids, sore neck, double vision, FATIGUE, and sore muscles in legs. I've also been diagnosed with having Sensory Neuropothy.

Twitchiness can also be caused by too high of a dose of mestinon. If it is wearing off before the next dose, you need to move the dose, not take more. If it isn't strong enough, then that's different.

I am seropositive for MG. I have had too much mestinon and the typical indicator is lots of twitching, esp the eyes and face. But I do still have other twitches, with the larger muscles, like down my side. Those are for no good reason, other than MG. :-) Hope that helps.

Oh but I haven't been on any meds for it.. She is having the blood tests done & I will know in approx 2 weeks. I've been twitching body wide for 7+ months. My Vit B12 came back normal.. What does that mean??

I think so many people don't have concrete diagnoses, since it seems nothing in medicine (especially neuromuscular disorders it seems) follows text books.... no one case is alike.. and there are so many varients and ranges out there! Combine that with dr's are just humans, and it really is hard to find a GREAT one, one that can think outside the box when the simple tests aren't positive... then that makes coming to a firm diagnosis difficult.. As long as you are with a dr who listens to you and understands though you may not be dragging a limb or in a wheelchair that YOU dont' feel YOUR normal and to investigate that, that's whats so important...
I have sensory issues too- though I have at times questioned maybe it was all in my head, until a skin biopsy came back abnormal.. I Have burning, numbness etc at times, and almost no sensory issues at other times..
My twitching is also exacerbated by exercise or fatigue.. I noticed it first 4 years ago after going for a long walk when pregnant with my daughter (i was throwing up a ton, so figured it was malnutrition/electrolyte abnormalities).. turns not wasn't the case!!! Good luck!!