Fasciculations

[jrtriggs]

I am curious if anyone knows if the number of fasciculations relates to the disease progress? In other words, the more fasciculation the faster the disease is progressing. Some days I have a lot and other days less. There seems to be more if I exert myself.

 

[BlueandGold]

If the number of fascics is a gauge to your progression then I'm at the end! My twitching started as one of my very first symptoms 14 months ago. They are constant, 24/7. I have never had a single day of relief since they started and they are body-wide. Everywhere. Every day.

Vince

 

[Atsugi]

My PALS Krissy had a very rapid progression; first symptom to death was less than a year. But twitches were mild and localized. They showed up only after she was diagnosed. They seemed to indicate which muscle was going to be the next to paralyze.

 

[Nikki J]

My experience is similar to Krissy's except I am blessedly slower progression. I think there is a lot of variation maybe by subtypes. Krissy had the c9 defect as I do

 

[KatB]

Nikki, what is the c9 defect?
Kat

 

[Nikki J]

C9orf72 is a genetic defect that causes one of the familial forms of ALS. My mom had it as did 3 of her siblings If you have the defect the chance of developing ALS is close to 100 percent. My sister and I inherited the defect and have ALS

 

[Music67]

jrtriggs - I'll mention it again that if you rub cocoanut oil on your area that has the fasciculations it will often make them subside for various lengths of time. Wishing my best to you.

 

[Mtzu]

I'm at my third twitchaversary. Mine have been pretty consistent starting in the summer of 2012, eventually spread all over my body, and never a pause. I didn't show any weakness till this past winter. Who knows what all of this means? It seems like a big guessing game most of the time.

 

[mpnatx]

My fasciculations are the most active in the morning after I wake up. Most are in my feet, legs and thighs. Then throughout the day, intermittent and random in other parts of my body. I'm not sure if this is weakening any part in particular. Seems like overall weakness everywhere.
Marty

 

[4tloml]

My husband has had fasciculations all over--one of the first signs for him. I just realized that he has had very little since starting on the high CBD/low THC cannabis.

His were constant, and like yours, they were always much worse after activity. However, mpnatx says

My fasciculations are the most active in the morning after I wake up.​

Goes to show how differently this disease impacts people.

 

[LifeEnthusiast]

I fall into the random category. I have a few places where the twitches are constant, but more like big thumps. Then every so often, I'll get an area that fasciculates constantly for an hour or so and then is gone for days. There is no pattern as such, although I do find, for the most part, they are worse at night while lying in bed or first thing in the morning. I am amazed how they are different for everyone.

 

[ShiftKicker]

LifeEnthusiast- I am exactly the same, right down to the random big thumps and the times of day they occur.
However, my difference is that I am currently in the PLS category. How strange this all is.

 

[LifeEnthusiast]

And I am as of this moment in the PMA category, Shiftkicker. Being so new to this, the more I learn the less I know. (If that makes any sense at all, other than to me.) About the only things I am certain of at this stage is that any everyone is different, any form of MND sucks, and this forum is a sanity saver.

 

[tripete]

They are constant, 24/7. I have never had a single day of relief since they started and they are body-wide. Everywhere. Every day.

Vince

Same here .. but some days they are much more intense in certain areas

 

[mcwtlg]

Mine are almost all in my upper body. My wife was leaning on my shoulder/arm/chest the other night watching TV and she commented that it must really bother me if she can feel them