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MND/ALS

Lillysnana

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Hi I'm worried sick about MND/ALS. I've been having trouble with my left hand for about 6 weeks now. It started with numbness in my hand when I was on my phone I'd shake my hand and it would go. I thought it was just being ony phone so much. Then on my phone again holding my phone in my left hand and using my left thumb to scroll my thumb started shaking. I managed to stop it quickly. The numbness went on and off until last week when I was sitting again on my phone and my top left arm started twitching, I could actually see it twitching. This terrified me. Since then I've had an achy pain right where the twitch was. And I've got small tiny twitches in my calves and thighs ( I've had this before). But I've never had a twitch like that in my arm before. I also have a weak tired feeling in my arms and legs and throat ( again I've had this before on and off for about 7 years). I am under a lot of stress but that twitch in my arm changed everything. I have had a sore neck and shoulder for a while but I'm not sure if your neck pain can cause twitching. I also have a very sore and aching face and I can't open my mouth wide but I do have TMD so I think that's what it is. I've been reading stories about MND and people often had twitching and numb fingers. I'm so so scared. I can't sleep because I'm thinking about MND. My doctors aren't seeing anyone and they'll say it's just anxiety as they always do. I sit and cry alot because of it and my arm is sore when I hold my phone. Not to painful but achey. I'm so worried I've been thinking of ending it all as I truly couldn't handle that diagnosis.
 

Bobnnat

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Hi Nana,

I can promise you, you do not have what you fear. So many things you mention are NOT symptoms or in any way associated with MND/ALS. First, pain is not a part of the disease. Perhaps in the final stage due to the extreme spacicity (sp?). Shaky thumb is also not. i had the same thing years ago. My thumb would start twitching or shake suddenly or when I used it. Like you, I could stop it..it only lasted a bit. My doctor said it’s common and is nerve and/ or anxiety related. It eventually went away after I stopped worrying about it.

Twitching only occurs AFTER clinical weakness. I say clinical as opposed to perceived. With clinical weakness, you simply cannot use a muscle. You literally can’t turn a key in a lock, or you can’t hold a cup..it falls out of your hand. With the feet and legs, you are unable to climb stairs. You’re not able to rise from a seated position. Perceived weakness on the other hand is the “feeling” you can’t do something which you actually can do..its in the mind.

ALS is about doing...you cannot DO a certain thing, no matter how hard or long you try. So, what is it then? I would wager a large sum that it’s a combination of muscle pain, anxiety (the leading cause of twitching, along with use or overuse of a muscle), and possibly some form of carpal tunnel. There are similar “tunnel” nerve issues associated with different parts of the arm, like the wrist, mid and upper arm. Carpal tunnel gets the press, but several kinds exist..like cubit tunnel. These are all harmless, albeit annoying.

i can also assure you that all of us with HA have at one time or several times, feared what you fear. I hope you can catch yourself before you fall deep in the rabbit hole that many of us have done in the past. It can be very tough to dig yourself out of.

I respectfully say to you: STOP IT NOW.

Bob
 
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The numbness you describe sounds much more like a pinched nerve than anything serious. I've had body wide twitching for 8 years now and know many others that have had it at least that long. Twitching is really very common, most people just don't really notice it, but you're afraid right now and thus hyper-vigilant. Stay strong and know that this isn't anything sinister, and it too shall pass.
 
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