My tale

[midwest2021]

Hello. First of all, God bless everyone afflicted with this disease and all those taking care of those afflicted...including the people that run and moderate this board. Your knowledge is stunning. In early February (not inferring anything, but about 4 days after my 2nd pfizer shot), my legs abruptly lit up like a Christmas tree. Mass twitching in calves and lower thighs and cramping that once was so bad I thought I had a blood clot. This was 24/7 for months. Fortunately, I was able to see a neurologist with ALS experience in March (no easy task in Chicago when most were booked until July). It was actually kind of funny when I told him what I was there for. He immediately commented, "and you googled this and now have ALS, right". It was said with a smile, meant and taken as a reassurance. EMG was interpreted as benign fasiculations and I was sent on my way. Unfortunately, when this first started, and prior to seeing the neurologist I plunged head first into a deep rabbit hole with anxiety completely off the charts. Emergency room anxiety. Every twitch, spasm, belch that occurred in my body was all of a sudden evidence that I had ALS. I pretty much put it out of my mind after the EMG although the twitching persisted unabated until about May when it started to improved somewhat. It's not gone, but 7 months later it's probably about 30% of where it was in February-May. At no point was there weakness or loss of function and this board served to reassure me more times than I can express my gratitude for. For my own peace of mind, I am going for neuro evaluation at a well known Chicago teaching hospital. If I get a clean slate from them, then I'm putting this behind me. Now.....please don't take this as a lecture, but as a sincere piece of advice. Many of you who like me, plunged into the rabbit hole, will be prescribed benzodiazepines, maybe for the first time ever. These are miracle drugs that literally in minutes can take a person from utter despair to a feeling of relative normalcy. Unfortunately, depending on the half-life, the effects don't last long and that sends many reaching for the bottle again...and again...and again. That can lead to a tolerance which requires higher and higher doses to produce the same effect. So, while I'm 99.9% sure I do not have the disease that started all of this, I'm now tapering off benzodiazepines and some days are unpleasant. Again, I mean no preaching or lecture, but be careful with these things. If the moderators feel that this is inappropriate or in the wrong forum, please feel free to delete and move. Most of all, best of luck to every one of you.