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Re: some sort of occasional internal vibration

Hi - I also get twitches, but I get them not only in my legs, but my arms, neck, and around my eyes. Occasionally, I have gotten them around my mouth, and a few other places. Legs (especially calves) are the most common.

The main difference for me is that sometimes (not always) they are accompanied by a type of pain that I don't even know how to describe, except to say that it is so intense and extreme that I would not be able to function if it were of any significant duration. Usually though, it comes in 'waves', so that I can cope with it for the period of time it lasts - which may be anywhere from 10 minutes to an hour. Fortunately that doesn't happen too frequently, maybe once a week.

I am totally convinced that physicians and scientists know very little about MC, and aren't terribly motivated to really learn more, because it is so rare, and because it is neither medically 'debilitating' nor 'glamorous' in the sense of attracting grant monies or other financial support. So most doctors I have talked with are kind of glib and dismissive, stating "Myotonia Congenita is not progressive, it doesn't disable you, and it causes no pain."

It seems that real life feedback from people who have MC is not of tremendous interest because it belies what their outdated and limited information offers them. They prefer the texts, because they have been conditioned not to rely on patient information as accurate and dependable.

Sorry for my rant - I'm frustrated! Lois

Type of Myotonia: Myotonia Congenita, Becker's type

Country: USA

Re: some sort of occasional internal vibration

Thanks for the info Lois, and I share your view involving doctors according to my limited exposure and experience.

- Will

Type of Myotonia: Becker MC

Country: USA

Re: some sort of occasional internal vibration

I get the twitching too, from mildly amusing to really annoying. It doesn't seem to be localised to any one area, any muscle will do, but the bigger muscles groups do seem to suffer the most.

Type of Myotonia: Becker's

Country: England

Re: some sort of occasional internal vibration

Lois:

I know what you mean. I've wanted to send thankyou cards to every researcher who's published a paper on myotonia because I have to admit, from a practical perspective, there are "better" things to study. I imagine though, with advances in nanotechnology and bioengineering that ion channels will become more of an interest to the scientific community in the future.

I also find many of the descriptions of myotonia congenita in medical literature a bit understated,though this seems to be improving. I actually find the very very old descriptions to be a little more accurate because they were written before there was an established protocol for writing research papers, and the researchers/doctors were willing to be more liberal and candid with their thoughts, and state all of the patient's or subjects complaints. Researchers today have a lot on the line and so are less willing to commit to saying things they feel might be relevant but haven't substantiated.

Concerning the sensations....
I do get twitches from time to time but in my case I'm pretty sure I'm just crimping a nerve somewhere. These other sensations I get after walking, I'm not convinced are actual muscle fibre contractions. The more I think about it the more I think it's some type of atypical electrical activity elsewhere in the muscle, because I feel some of them propagate down a nerve to the bottom of my foot.

Type of Myotonia: Becker

Re: some sort of occasional internal vibration

Hey, i'm new here on these forums.
I'm 19 and i play basketball on a decent level.
I have the twitches too once in a while.
sometimes while using Mexitil (a medicine that helps my muscels ALOT to be honest) - i guess it's a side effect
sometimes when i'm not on any

On both cases i've experienced them the most in my legs (cavs mostly)
Any confirmation that this might be cause of Beckers?

greets (and sorry about the typo's :) )

Type of Myotonia: Becker

Country: Belgium

Re: some sort of occasional internal vibration

Nick:

To be honest I have nothing beyond speculation that it's related to the MC.

I started getting the sensations shortly before the onset of the actual myotonic cramping.

I think there are symptoms to some forms of MC that are overshadowed by the myotonic cramping itself, and I think I started experiencing them at a very early age.

The disorder has a high degree of symptom variability because there are so many different mutations that can cause it and everyone is a little different.

It would be interesting if there was a large study done to see if certain symptoms correlated with certain mutations. I wouldn't be surprised if that were the case.

Type of Myotonia: Becker