Fasciculations

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AfraidButNotAlone

Senior member
Joined
Jul 27, 2013
Messages
538
Reason
PALS
Diagnosis
07/2013
Country
US
State
GA
City
Atlanta
Is there anything out there that can help minimize the fascicuations?

I got a bunch and they seem to be getting worse.
 
It was probably my imagination, but in my early stages a little (well, perhaps more that just a little) scotch helped calm my fasiculations. Kid you not. Had heavy fasiculations early on but they have calmed down at least by 90%. Also, I noticed that exercise acerbated my fasiculations so I reduced my level of exercise. That being said, however, what works for one doesn't necessarily work for another. Our disease is particularly peculiar. Go figure. Hope other forum members can provide more help. Anyway, welcome aboard. The forum is a place to meet people who unselfishly provide help and wisdom not found anywhere else (that I am aware of, at least). God bless.
 
Fasiculations were the first thing I noticed last march . Strength loss came later . the more tired I am the worse my fasiculations got , but they are there 24/7 all over my body . According to my Doctor , there is not much they can do for them. I understand they lessen the further you progress.
John
 
Nothing can really be done.
 
Did you try the scotch? I don't notice mine after a few beers.

After a few years the twitching seems to go down but are constant.
 
Liquor seems to help, but I don't want to drink too much!

My twitches are always worse in the morning when I wake up and right before I go to bed. They minimize during the day, but are ever present.
 
As with some other PALS, fasciculations came first and weakness later. My fasciculations are like Afraid&Alone are, worse when I first go to bed and then when I get up in the AM.

During the day they aren't so bad. I have massaged the area which sometimes helps. I've also rubbed aspercreme onto the area which, at least for me, seems to help too.
A beer or some vodka does help, but with my medications and other issues, alcohol isn't my ℞ of choice!
I have read about differing results using virgin coconut oil rubbed into the skin. I have it but so far haven't used it for that. However, my wife has rubbed the coconut oil into my calves when my restless leg syndrome is really bad and it helps. Or maybe it's just the massage? Who knows...
Everyone is different!
 
How strong is the coconut smell with the oil? Also, what vitamins do you take?
 
massaging ramps up the fasciculations for my PALS and at first it really scared me, but I learned to ignore them as the massage helps so much!

I just got almond oil for his massage, I think I'll try for coconut next time, thanks for the tip!
 
texastracy...it's not a very strong coconut smell. If it was it would rive me nuts, I hate coconut!

I bought a container of pure virgin coconut oil on Amazon. But I think Walmart carries some too.
 
You can get pure virgin, organic coconut oil at Costco. Tim's were really bad at the beginning, so much so that it looked like mice were crawling under his skin over his abdomen. As he has lost function, and atrophied they have diminished. Because Tim had a positive Anti GM1 which could indicate MMN we insisted we do a trial of IVIG which is the treatment. His fasciculations almost completely went away, and he did regain some strength in his arms and affected leg. Although 3 different neurologist did not think he had MMN, because he did not improve enough with treatment, they agreed that he should continue with it. Unfortunately after 6 months the improvement diminished to the point where we did not notice any change following treatment, so we discontinued them. But Tim's fasciculations never did return as bad as they were.
 
My fasics come and go. Today they are all over my chest and lower back. I always have some, but I just don't notice them as much any more. My arms are pretty bad so much so that it is almost like a palsy.
 
You can get pure virgin, organic coconut oil at Costco. Tim's were really bad at the beginning, so much so that it looked like mice were crawling under his skin over his abdomen. As he has lost function, and atrophied they have diminished. Because Tim had a positive Anti GM1 which could indicate MMN we insisted we do a trial of IVIG which is the treatment. His fasciculations almost completely went away, and he did regain some strength in his arms and affected leg. Although 3 different neurologist did not think he had MMN, because he did not improve enough with treatment, they agreed that he should continue with it. Unfortunately after 6 months the improvement diminished to the point where we did not notice any change following treatment, so we discontinued them. But Tim's fasciculations never did return as bad as they were.

I'm still learning all the acronyms. What is MMN? Anti GM1? IVIG?
 
MMN- Multifocal Motor Neuropathy, is not terminal but does cause total paralysis. It is more rare than ALS and can be treated with IVIG- intravenous immunoglobulin. Usually starts in an upper extremity, and progresses from there.

Anti GM1-Antibodies to ganglioside GM1 (anti-GM1 antibodies) have been implicated in the pathogenesis of Guillain–Barré syndrome (GBS), multifocal motor neuropathy (MMN) and motor neuron disease. Although the elevated titres of these antibodies have been amply documented in multifocal motor neuropathy and a motor axonal variant of GBS, or acute motor axonal neuropathy (AMAN), their exact role in the pathogenesis remains elusive.

I know how difficult acronyms can be as I have been a critical care nurse for 32 years. The worst part is that some times the same acronym mean a couple of things, and then when doctors come from different countries it is compounded. I just type it into google and add neurology when it is one from this site.

Paulette
 
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