For those of you who remember the problem I was having this past weekend with mestonin, I decided to see the therapist at my clinic and see what she thought. I'd realized that my panic attacks were keeping me from seeing anything clearly especially since I must admit that I have a fear of medication that most likely stems from my sensitivity to most drugs. Anyway, we devised a plan for me to be able to take the mestonin in order to figure out if I really am having worse than normal side effects or if it is merely my panic speaking. I plan on doing after the snowstorm - probably tomorrow afternoon - so I won't feel trapped on top of everything.

Anyway, I was wondering if you could help me with a symptom I have been having that is just getting worse as time goes on. I've mentioned it to doctors but no one ever acknowledges my questions regarding this issue. I have a lot of internal shaking and minor tremors, twitches, and spasms. The internal shaking is constant and 24/7 while the other things are sporadic. I was wondering if this is normal. I ask because it seems that MG is about lack of muscle response whereas mine seem to be working overtime. It is very upsetting and annoying. It feels like everything inside of me is vibrating - sort of like static. I was hoping to shed a bit more light on what is going on with the horror story that my body has turned into. I have been having this problem for almost as long as I've been having trouble and I'm not taking any meds at all so that is not an issue. Any ideas?

Again, I want to thank everyone for all of your help with my problem with the mestonin this weekend. You guys are wonderful and I am so thankful that I found this community.

Have you had your thyroid checked? Lots of MGers have thyroid problems.

Yeah. It was normal. It's odd to me how nice it is (in a way) to have a positive result to a test because it means there actually is something wrong. I'm so used to wanting all tests to be negative but every negative result brings you further from help. Very frustrating.

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.

Some people who are low in B12 report this symptom.

Several have had it on the PN forum.

Hi guys,

Around the same time that my speech issues started, I started getting a lot of twitching in my index and middle finger...I still have it until this day...I'd also notice occassional muscle twitches in my legs and feet...

I get a lot of vibrating in my back...Most of the twitches/vibrating sensations are on my left side, I've noticed...It's pretty annoying, and was downright frightening when I looked up the sx on the net before...

I did find two other neurological illnesses that happen more with people who have MG/thymoma....And these sx fit under those sorta...One is cramp-fasciculation/neuromyotonia and the other is rippling muscle disease...ANother one is stiff man disease, but that's a whole different can of worms and doesn't really have these sx, I don't think...Just putting it out there in case someone else is ever having weird sx and needs a clue as to what might be causing them...That one's even more rare...

The 'internal shaking' thing has been mentioned a lot by people with neuromyotonia whose posts I've come across...They described it like their organs were shaking/having seizures or something like that...Not sure if that's how it feels for you guys...

I think that with neuromyotonia, it can be sorta benign but annoying, and other times, very severe if it affects the CNS...BUt mostly, I think that it just sorta consists of twitching and delayed muscle relaxation...

BUt I don't know...They're all pretty rare, but when you have MG, seems like you attract the other 'weirdos' (by weirdos, i mean unusual diseases ).

Sorry you're going through this...It sounds unpleasant...I hope the doc. can put your worries to rest, and that's it's just an another annoying MG-somehwhat related thing!


Nicky

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.

Thanks for your opinion. Yeah, I'm not shocked that it's something weird that's going on (story of my life ). I'm just going to have to pressure my neuro into listening to me on this and not let him change the subject. It's amazing how many doctors like to do that when they're confused by something. Ah well.

Ok, I had to think and think and think and think...............

I went waaaaaaaaaay back to before I was diagnosed with MG. I do remember feeling sort of "wired" -- like I had electricity running through the middle of me. But, this STOPPED when I started taking Claritin every day. I remember being so shocked by this -- I actually MISSED the "hum" -- seemed to have had it most of my life.

I also had a brain that would NOT shut down -- I sometimes had trouble going to sleep at night -- replaying the day -- thinking about the next day's work -- Claritin calmed that down, too. GOOD STUFF!!

I don't take Claritin now -- it stopped working -- switched to Zyrtec about a year ago -- the humming hasn't returned.

Hi DeliaDee,

I don't know if this will help you, but neuromyotonia came to mind with me too when I read your post. It's something I have looked into too because I have a LOT of twitching (fasciculations) all over my body, with my calves getting most of them. Mine also are set off by exertion. Yoga (which I love) can set me off really badly, unfortunately. Once I made myself clean the whole house, which took me all day, and spent the next few hours lying in bed twitching (and feeling utterly exhausted). I also have cramps at times, and I don't dare stretch with my toes pointing or I'll get a terrible cramp in my calves.

I do get the internal shaking but it's not constant. It will last for a few weeks and then go away. At the same time I can also have tremors in my arms. I can confirm what Nicky told you though that people with neuromyotonia do report this internal shakiness (not that Nicky needs any confirming, she's one smart cookie).

I know how you feel about having symptoms which don't fit into the mg frame. Instead of thinking in terms of complex, multiple diseases I've had doctors just dismiss mg because I have these symptoms. I also have had mg dismissed because I have terrible fatigue and I have suffered from horrible cognitive difficulties in the past.

Anyway, this video might be helpful to you. It's a video of fasciculations in the calf of a patient with neuromyotonia.

http://www.neuromyotonia.co.uk/tests.html

I have a video of myself that looks *exactly* the same except that my fasciculations are coming faster. I'd be happy to send you the video if you think it would be helpful - just pm me an email address that I can send it to. I don't know if it would be helpful to you since I haven't been diagnosed with anything that would explain the twitches but again, I'd be happy to send it to you. The twitches have been described as looking like a worm crawling under the skin and that is definitely true in my case.

One way of diagnosing neuromyotonia is to test for voltage gated potassium channel antibodies. I have tested negative, but only 30-40% of people who have neuromyotonia have positive blood results.

I'm sorry, I can't tell you a whole lot more since I've gotten nowhere with getting an explanantion of all this. The local neuros give me a blank stare when I bring it up. I guess if they don't have accurate information on mg it's going to be hopeless that they would know about neuromyotonia. I am going to be seeing an mg super-specialist next month though, and I can get back to you about what he says if you think you have similar issues.

There is one good, informative site that you might want to look into:

http://www.pnhinfo.com/

Whether this addresses your issues or not, I wish you very good luck in getting some answers!

Ally