DesertKnight
Well-known member
Hey everyone! I've been writing about my BFS experience and realized something interesting about the start of this mess. I remember that in the beginning the only twitch I had was in my calf, occasionally my foot on the right side. This led me to the internet which in turn led me to Dr. Google. Withing a few hours the twitching spread to my other leg, my arms and my abs and back. A couple of days later I read about bulbar onset ALS and that's when the twitching began moving north towards my face. One night laying in bed at a hotel I recall hoping, praying, that the twitches wouldn't move to my face and tongue. As my anxiety built I was almost crying, dreading that first twitch in my face. And that's when it happened. I felt a twitch in my left cheek and they spread like wildfire that night. The next day I was in the pool with my kids, twitching from face to toes, but relieved it wasn't in my tongue. Then when we got out for lunch I was eating and bit my tongue. This made my mind jump to the bulbar symptoms and I kid you not, just a few seconds later I got my first tongue twitch. This carried on for days, scalp to feet, never a moment I wasn't twitching, popping, or buzzing somewhere. Many times I would have them going off in different areas simultaneously every second. That was back when I had thousands and thousands a day.Once I started intensive therapy and my medication took effect, they reduced from thousands to hundreds. As my fear of ALS being a disease of twitching waned, so did my twitches. Now I'm to a point where I never have them in my tongue, only occasionally will I have one in my face or neck, and only while under stress or anxiety. They have slowed immensely in my arms and only once in a blue moon do I have them in my abs or back. They have slowly subsided back to the point of origination; my right calf and foot. They are not continuous by any means and I perhaps have 100 per day.I am confident there are many causes of BFS, from neurological, immunological, to pure psychological (which I believe my experience has been.) To clarify, I believe the original twitches in my calf and foot are physical, from pinched nerve roots in my back. I believe it was purely hysteria that led to the spread of them all over my body. I would dwell and ponder each and every area that wasn't twitching until it started there, then I would move on to the next until there was nowhere left untouched. As my fear and extreme anxiety died down, so did the symptoms. Once I realized the TRUE characteristics of bulbar onset ALS, my tongue twitches stopped immediately. It followed this pattern until I'm left where I am now, the way I was in the beginning. Are there any of you that recognize this progression of BFS and can relate? ~Frances
