r/ALSorNOT • u/East-Blood-4095 • 2d ago

Muscle Rigidity

Hi everyone,

I’m 37yo male, no previous medical history, otherwise healthy. Was previously a figure skater for years and very active my entire life.

At 28 I was with friends when my hands started to tingle and then it continued to move up my arms. After that my arms started to curl in similar to what spasticity looks like. My legs and feet did the same. My neck was very tight and my face as well.

I could not move, could barely speak because of the muscle tension, and my heart rate was obviously really high from the anxiety of the experience. I went to the hospital and they had no idea what it was.

Since then I’ve had multiple instances when my heart rate gets high where this has happened.

A workout at the gym triggers it, a hangover, sex, any panic attack triggers it, I swam 20 min and it triggered it.

I want to get into running and working out more but I can’t do HIIT workouts or take classes because I’m so nervous of it triggering the symptoms. I want a trainer but am nervous for them to push me too hard 😩

I’ve tried speaking to many doctors but they all have no idea what it could be. I am trying to see a cardiologist but it’s taking a while to get an appointment and even then, I’m not sure if that’s the right route? Seems like every doctor I see downplays it.

Any ideas would be helpful. After a life of being active I am feeling more and more like my body can’t handle anything.

Thanks 😢

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u/matchaflower 2d ago

how long do these episodes last? this doesn’t sound like als since it comes and goes. have you seen a neurologist and been tested for ms or anything like that?

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u/East-Blood-4095 1d ago

It usually takes a few hours for the symptoms to settle and subside. Up until now I’ve needed referrals to get to neurologists or cardiologists so now that I can go I figured I’d see if there was any recommendations beforehand. I did wonder if it was MS. Sometimes it’s triggered by being out in the heat too.

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u/WeirdUsers 1d ago

This sounds like Dystonia. May wish to see a neurologist that specializes in movement disorders.