Questions about fasculations

[sigma35]

Let me first start out by thanking everyone that got back to me with my previous questions, and and to everyone on this forum. I am getting more info here than my doctor was able to tell me. Of course this is probably due to the fact that I have new questions everyday, and I have only seen both of my doctors (one was a second opinion ) a limited number of times. My wonderful wife set me up with a local ALS center, but that appointment is not until the first week in June, so I am very thankful for this forum to tide me over. Anyway, my question concerns fasculations. Ever since my diagnosis, I have been noticing a lot more twitching , which to be honest I really never noticed before. I was told by two of the members here that is because I am a lot more aware of the disease. Fair enough. It started in my legs, which was noticed by my Doctor. Now I see it in my arms, and most recently in my stomach. Can you really have fasculations in your stomach? My wife joked to me when I lifted my shirt this morning that it looks like I have a baby kicking around in there. I am trying to have a positive attitude about this, but to be honest, I am starting to freak out a little. Things seem to be progressing faster than I ever thought. Again, I am going to an ALS center very soon, where I am told there is a lot of doctors there that day to check you from head to toe, but any help on this subject would be great.

Thank you
sigma35 - Bob

 

[viviana]

hello sigma,

I too was recently diagnosed and have fasciculations. For me when I get stressed i have more of them, when i am more calm...twitches calm down as well. Fasciculations means firing of motor neurons...in ALS as motor neurons die, they start twitching. Ever since I am on rilutek though I noticed I do not twitch as much. Do u take rilutek?

 

[viviana]

I also have twitches in my stomach and back

 

[Danijela]

Hi,

yes, you can have fasciculations on your stomach, and in any other muscle group, inlcuding your face, your tongue etc.

Having (or increasingly noticing) fasciculations does not mean that you are progressing at a greater speed or rapidly. I have come across PALs who have had fasciculations for over a decade, and all over their bodies. I think that the consensus is that there are just a part of MND (as well as some other benign conditions) but that they are not particularly predictive of anything.

 

[sigma35]

Thanks for the response. As far as taking rilutek, the last Doctor I saw told me there aren't many drugs to take for ALS. The only one he suggested was Lithium. I am hoping to get a lot more info when I go on my ALS center appointment in a couple of weeks.

 

[MarianneS]

I too have the twitching all over, I just try and ignore it. Your wife sounds like a caring person with a great sense of humor, just what you need. My husband is quite similar and keeps me laughing too.

I go to an ALS clinic here in MA and the staff is wonderful and its helpful to have all the disciplines in one setting at one appointment. I'm sure you will find the same in NY.

Marianne

 

[Zaphoon]

I get rolling fascics in my stomach from time to time, have them constantly in my legs and various times in my arms. My condition is believed to be benign. I notice they pick up when stress levels increase. To cure this, I'm eating bananas, drinking water and stretching.

I'll have a book out shortly after this treatment works for me. I will entitle it, "A Banana A Day Kept My Twitches At Bay!"

Zaphoon