So sorry that you have to go through this, the waiting for a definite answer is always hard. As far as the fasciculations are concerned, they can be quite disturbing. Initially my husband had them mostly in his upper body, with cramping in his legs. I don't know how he slept with them, because they kept me awake snuggled next to him. I have had nerve damage in my left arm, which has left me with some deficit, and fasciculations at times. I think it is a matter of getting use to them, and they do seem to fade. My husband found the abdominal fasciculations the worst, but thankfully it didn't last that long. Because my husband had a positive AntiGM1 antibody there was some question that it might be something that mimics ALS, called MMN (multifocal motor neuropathy) which can be treated with IVIG. So we did a trial, and his fasciculations almost completely disappeared. He did have some improvement of some symptoms but not enough to change the diagnosis from ALS to MMN. He had the treatment for 6 months, until it lost its efficacy and stopped. One thing that did help him and my fasciculations was acupuncture. I have a very good physiotherapist that also does massage along with acupuncture, and she managed to get rid of mine, except when I overdo it. That might be something to consider, as well as maybe taming down any workouts. Many have noticed an increase of fascics with extra exercise. Swimming is an excellent alternative to weight training, and also helps with stretching.
You will be in my prayers, as with all the others that are dealing with this disease. It will get easier, and you will develop routines that will help. But mostly the camaraderie found hear, and the love and support of family makes it bearable. God Bless.
Paulette
