Fasciculations": how long have you had them without muscle or strength loss?

[Donkeyboy]

Hi all.
If i didn't have fasciculations i could literally forget i have MND ( occasionally). My main mental torment personallly is the worry of when that next muscle is going to waste and the strength starts to go. I was used in a study at Kings College recently where they are looking deeply(ultra scan and skinpads) at the nature and role of fasciculations. Some say it has a direct relation to the speed of your disease, others disagree.
I certainly have had pretty active fasciculations in my right pectoral for approaching 2 years now with no muscle or strength loss. My right arm probably was around the same timespan(2 years) before it went. The left is weakening now.
I have slight fasciculations in my legs, more right than left but not crazy, so am hoping i've got years still in the legs!?
Has anyone else experienced years of fasciculations without any losses?
Regards
John

[nunhead_man]

Good morning John

Generally speaking I believe that if you have a diagnosis of MND that fascisculations indicate that a particular muscle is on its way out although there appears to be no way to predict how long for circulations might go on for before that muscle stops working.

In my case the main fasciculations I have are in my left and right biceps where both arms are decaying slowly and have been over the last five years.

Everybody's progression goes at a different speed and a different selection of muscles get lost so I'm not sure how much good my answer is except perhaps to set a marker for others to respond to.

[JAY TEE]

John. The MND onward issue varies to all of us. Me formally diagnosed May 2014 ALS MND. My onfall did start a year before I pain in left hip. Now all down left side in left arm and cannot walk and talk. I have peg food a bit but can still eat if food mashed up. My soliva bad. I sit in wheelchair all day. I am hoisted in out bed with sit stand hoist
Emotional level high when listening my favourite music
Hope everything ok for you.
Best wishes John

[Stonehengeman]

Yes I had fasciculations for years in both legs. However it is Progressive Bulbar Palsy that was diagnosed in Jan 2018 and to date I have had no problems with loss of leg or arm mobility.