Alan Stone

Ginny, I also am getting the impression that Firdapse efficacy is slowly waning. Been taking 20 mgs 3 times daily since 6/18 per my neurologist’s suggestion. I feel like 4 times daily might improve symptoms. I intend to suggest this to neuro on 05/23 ay appointment.

The Miami Dolphins have a wide receiver last name Waddle and when he makes a great play his teammates gather around him and do the “waddle” dance. I’ve been doing that dance since I was diagnosed in 2016.

I am on 60 mgs/day, (Firdapse) only because my neuro thinks I’d be flirting with seizures to go higher. Personally, I’d like to think I could go to 80 mgs, (or 100 mgs) when evening activities might require a degree of muscle coordination.

Definitely, my dealing capabilities are affected by the efficacy of the Firdapse. Just ask my wife. She’s told me my coping abilities handling frustrating situations seems to be at a minimum when my Firdapse is wearing thin. I get overwhelmed easier. That, coming from retired airline pilot.

My neighbor, a certified psychoanalyst, advocates for CBD for pain and sleep issues, but I have not tried it yet.

Alan, I wondered if sooner or later another Alan would join this forum. Guess both of us will have to include last names. Welcome. This platform has been a Godsent for me, as LEMS is so rare. The EMG was what confirmed LEMS in my case. Prior to actual confirmation, most of us have gone through years of unhelpful advice and diagnosis. It is truly…[Read more]

Thanks, Price for your comments. I neglected to include that I’ve been using a CPAP since 2008, but the onset of the LEMS was insidious and caused confusion as to what came first, (It took quite some time to get a correct diagnosis). I concur with your “LEMS crash” and “adventure” comments.