BFS Recovery: Hoping for Help

[coolcat]

my bfs is gone!
eric

 

[Diego4Life]

Alonzo said "Once you figure out that there is a HUGE difference between ALS twitches and BFS twitches, and usually after a doctor visit or three, a person will start to calm down, and with that, symptoms start backing-off a bit".

Alonzo, thank you for your great post. I was very interested to read the above statement that there is a huge difference between BFS and ALS twitches. Is this absolutely right? My GP said twitching is twitching. I know that fasciculations show on an EMG and obviously they can see signs of denervation if this is the cause. But do you mean that the actual twitches that we see and feel ourselves are different? I remember reading in BFS in a nutshell I think that ALS fasciculations are weaker and less notiecable? Is this what you mean? I get huge twitches in my calves, but also get the hardly noticeable ones also. Many of us have not had EMG's on here because the neuros have thought it unnecessary, so we don't have that reassurance that others have of a 'clean EMG'. I think it would be very helpful if you would expand on this subject a little as you seem to have done a great deal of research and clearly have a lot of knowledge on the subject.

Thank you so much,

Diego4Life

 

[Alonzo]

Diego4Life, I'm sorry to say but your GP is wrong, a twitch is NOT a twitch. There are "true fasciculations" and then there are random muscle twitches, and there are even jerks, jolts, thumps and so on, all of which (except for true fasciculations for the most part) have NOTHING to do with ALS.

Now really, have you seen ANYONE on here GET ALS? Nope.

If "twitches were twitches", then why is it that random twitches do not show up on an EMG even when you are twitching while its being performed? It's because some are fired from nerves and some are "chemically" fired from things such as protiens, adrenaline and so on.

Just because a muscle movement occurs certainly doesn't mean they are occuring for the same reasons. That's like associating headaches with brain tumors and having a doctor say "a headache is a headache". That is just not correct.

You can have migrane headaches (for which they don't really know why the occur) yet), you can have a stress headache (which is caused by tense muscles), you can have sinus headaches (which are obvious why they occur), you can have a headache from lack of oxygen or chemical contact which depletes the oxygen levels in the brain), you can have all kinds of headaches of which NONE are any relation to the other and none have anything to do with brain tumors, just like you can have twitches, which none might have any relation to the other, ESPECIALLY ALS related causes.

 

[garymills]

I would just add to the conversation that true fasciculations aren't necessarily indicative of anything sinister either. Many members, including myself, have true fasciculations as seen on emg and still have a benign dx.

Take care,

Gary