I can relate to the constant fasciculations. My calves and right thigh are non stop (my wife said it looks like an alien is crawling under my skin). Occasionally they extend to my biceps, hand, or torso. While not painful, the anxiety they cause is extreme resulting in loss of sleep as I lay there with my muscles randomly firing convinced that I have ALS.

My neurologist has ruled out all fasciculation causes except for ALS and BFS, and I am now waiting to be scheduled for a 3 limb EMG to get a definitive diagnosis. In the meantime, I feel like my life is on hold not knowing what the future looks like. The effects are not limited to myself, with the stress causing my wife to have ventricular tachycardia and saw a cardiologist for the first time last week and is herself now scheduled for a bevy of tests.

My dilemma (putting the cart before the horse) is what to do should I get the expected ALS diagnosis. My neurologist would send me to Penn for their ALS program since it is nearby to my Del. home. However, my house is a colonial and would be a nightmare to navigate when my mobility is compromised. On the other hand, we have a load of friends there which would provide a terrific support group for my wife.

My other home is on the beach in Hilton Head. I have a master suite on the first floor and an open floorplan which would permit me to function longer in my own house. I could enroll in the MUSC ALS program in Charleston or the ALS program at the Jacksonville Mayo. Either one is about 2 1/2 hours away. My wife would not have near the support group there, however. I find it much more peaceful in Hilton Head.

If it comes down to it, it will be a difficult choice.

I can't wait for the EMG's to be done so that I can move forward with my life, or what is left of it.