Hi, I'm the neurotic with an ALS-adjacent but much less severe neuromuscular condition (one that is purely genetic, and I believe rarer than ALS across the lifetime, so please don't worry about it.) My latest Charcot Marie Tooth symptom is crazy calf twitching as well as what feels like twitching in my chin. Supposedly the mutation I have is not supposed to affect the "bulbar" area usually but all of this makes me nervous.
Also the clinic I have been to is co-managed by the ALS clinic director, so whenever I call them I freak out as she tends to call herself the ALS director.
On a more positive note, I've started PT. I can still walk and type and eat everything after a year and a half of accelerated progression; my biggest symptom is muscle wasting on the top of my foot and balance being less good. However I did "tandem walk" in PT the other day so all is not lost. I use a hiking stick to feel a bit more secure in daily life. I walk a lot in an effort to stay active even though my feet are getting worse (the most likely thing I could be facing is foot surgery; turns out extremely slowly progressive conditions tend to cause orthopedic problems.)
anyway just checking in. you can tell me I don't have ALS if you'd like but far be it from me to reassurance seek.I have to say this is the toughest thing I've gone through in life so far.
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