Fasciculations, knee-kicks, pain and hand tremors

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louissmitty5

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Apr 27, 2021
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Learn about ALS
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I am awaiting a neurologist appointment which'll be a few months. Obviously this is going to be a long time for me. Here are my symptoms:


Body-wide fasciculations. One night I could feel my right armpit suddenly contract repetitively and violently. A week later the same happened but it immediately spread to the left side of my chest, upper back, abdomen and biceps. These contractions only occur sparingly 2 months later and now they are regular in my thighs and calves. These have been recognized by a doctor without clinical weakness.​
My knee suddenly kicks up at rest. Same with my toes. My neck also kicks forward and I have excessive shivering and shaking in the cold.​
My upper body seems to be permanently fatigued and painful. I get small dots of pain all over my body. Sometimes I get severe pains that just randomly occur like in various muscles of my hand and arm. Despite this I am still active and doing hill walks.​
Memory difficulties​
My memory has been completely shot. Someone says or hands me something and I can't remember it happening. I remember my girlfriend handed me a cutting board and immediately after I wondered how I had a cutting board in my hand. This might not be relevant but it is scary.​
Maybe less relevant but I have excessive saliva production which causes me to break into violent coughing fits and people note that I mumble a lot.​
Hand tremors. When straightening out my fingers are permanently kicking and shaking. My right ring finger looks like its on a swivel. This is only part of whats going on that seems progressive as the tremors are getting larger and more violent.​
If anyone has experience or insight into what is going on I would really appreciate it. The not-knowing is seriously impacting my daily life for something that could be less serious.

Forgot to mention but I also have constant tongue fasciculations
 
Hi Louis,

There is obviously a long list of possibilities, and just as likely more than one thing is going on and/or one thing is sort of heightening your perceptions as to others.

How long has it been since the first contraction? Are the dots of pain and memory issues in the same time frame?

With any kind of pain or trembling, of course, those can have effects on sleep, which in turn can amp them both up., screw up your memory, etc. So I would especially look to make sure your sleep is refreshing (you can record it on your phone and there are apps), to give your body the best chance of righting itself while you wait for your appointment.

Best,
Laurie
 
Hi lgelb, thank you for the response. It's been nearly two and a half months I think. The contractions started sometime February. The pains started in my bicep before any twitching as I remember complaining about being in constant pain that day. That bicep later would go into violent repetitive contractions but they stopped and there's no atrophy. The memory issues started a while before the contractions.
Yes sleep is important and my doctor gave me a small supply of sleeping pills for insomnia. I wake up a lot during the night so to be honest my sleep is pretty poor.
Forgot to mention but the doctor also noticed I have a constant trembling on the inner thighs. I can't feel it though.
Thanks again
 
Insomnia meds can play havoc with your memory, as well.

I don't think you have ALS, however. Did your GP do blood work?
 
Hi, yeah I'm completely healthy otherwise the twitching and hand tremors.
I hope it's not rude to ask but do you reckon there's chance it's ALS? My doctor said it's unlikely because she would have expected to see more symptoms by now. But I also understand that diagnosis is just a waiting process to see if things get worse.
If it's worth anything the twitches in my upper body have come back in full force over the last 3 days.

Thanks for the reply, I really appreciate it!
 
Hi there- Laurie stated pretty clearly in the post above she didn't think ALS. And your doctor thinks not ALS too.

While it's not ALS, it's clear you've got something going on, though it's unclear what it may be. I am hoping you will continue to work with your doctor/s to figure out what it is.

Take care
 
Okay cheers well I'll update the thread once I've gone to the neurology. Got upgraded to an emergency appointment so I should get back to you on the twentieth
 
Good news, after a couple of neuro visits I've gotten a diagnosis of 'benign cramp-fasciculation syndrome'. Obviously my fears aren't gonna be completely put to rest until I've been fine for a few years but other than that thanks for the help lgelb and shiftkicker
 
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