Some advice

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Mel71

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Thank you for taking my question. I have read the stickies, but have a question related to twitching.

The sticky says that twitching is not typically a symptom of ALS "especially if it is widespread". I have the occasional twitching in my quads, calves or hamstrings, but I have constant twitching in my left foot with my toes jerking regularly. There is some buzzing in this ankle and foot, but it is mostly jerking toes and twitching without sensory symptoms. It has progressed over the last few weeks.

Is jerking typical of an als presentation if it comes with twitching in a very targeted area?

I have a neuro appointment in a week. No clinical weakness. Power walking every day. No visible atrophy. The twitching and jerking stops with klonopin. I have a very stiff back according to the rheumatologist, but no autoimmune disorder or back pain that would explain nerve issues.

I would appreciate your thoughts.
 

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No, jerking, shaking, pulsing, tremors and twitching without clinical weakness are not a sign of ALS.
 

Mel71

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Thank you for replying.
 

lgelb

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Klonopin and others in the benzodiazepine class are not drugs that it's typically wise to keep taking just for twitching, so you may wish to discuss/explore other strategies for reducing your twitching. Diet, hydration, sleep, stress, exercise and seated position may all play a role.

Best,
Laurie
 

Mel71

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Thank you Laurie. The klonopin is a short term crutch (prescribed) for my anxiety as I await my neuro appointment. I just noticed that it improves the twitching.

Having so much twitching focused in my whole foot and toes has me more worried than I'd like to admit.
 

lgelb

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Of course it improves twitching -- it depresses the entire nervous system. Twitching comes and goes for most people. ALS does not. Do look into PT for your back, which could also help the twitching.
 

Mel71

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Thank you. I do think it could be a back issue, but the whole foot twitches which is what is most stressful. The arch will twitch, the toes will jump. Then the outside of my foot will twitch. It is widespread and I don't know that a back issue or pressed nerve would cause that. I've tried magnesium and potassium with only limited success.

The klonopin isn't helping much, but I'm trying everything I can think of to remain calm until my appointment.
 

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The biggest thing you need to get clear on is - twitching means nothing. Like really, without actual failure, it means not a single thing. Just stop and let that really sink in before you say: yes, but ... It means nothing.

Let us know after your appointment, but coming here between now and then is not likely to help you at all. You can take control and pursue things healthier things in the interval. I wish you the best.
 

Mel71

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Good morning. I just had my neurology appointment and it went exactly as you said it would. The neurologist did a very thorough exam and said that twitching means nothing. Not if its widespread. Not if it's localized. He restated what you always say...there would need to be clinical weakness (which happens before the twitching) and other neurological signs. He didn't even recommend an EMG. Says that he has this conversation more than once per week because of the internet.

I want to thank you all for answering my questions and for the firm approach. I wish you all well.
 
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