I had grown tired of reading the myriad presentations of MND and decided to see what actual patients were saying on ALSA. Time after time, I read the same thing, "I suddenly began tripping / lost the ability to grip my toôthbrush, etc.". Every bio I read made it clear that they FELT perfectly healthy, but were suddenly unable to move a hand properly, walk properly, etc. I saw the phrase, "it is isn't about feeling; it's about failing" repeated multiple times (same as on here). I myself have twice gone down the rabbit hole of fear because of a difference in calf size, weird tingling, twitching, hotspots, limb fatigue, etc., but have yet to truly FAIL at a task. I did not read a single post where someone said, "I used to run three miles daily, and now I'm exhausted after two" or anything of the sort. The patients with foot onset are simply unable to run -- period. Worried visitors kept inquiring about the "in between time", asking questions about gradual onset such as "before your fingers failed, did you notice if they were getting weaker?" This was answered with statements to the effect of "I felt fine -- and still do...so I was surprised to discover that I could no longer tie my shoes / walk normally, grasp a comb, etc." or "I kept falling down". Additionally, all cases I read about began distally or (when bulbar onset was suspected) there was pronounced change in speech noticed by others -- objective. I don't know if this will be helpful to anyone, but I felt it was worth repeating. I copied and saved some of the material so I'll have it handy if I need it in the future. Wishing everyone the best.
Spent Hours on ALSA Site; glad I did
- Thread starter Nytwister
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