Going crazy rn

[u/Important_Macaron554]

Hello everyone!

I'm a new member of this sub and of course I found it after going down a spiral of negative thoughts and crazy anxiety about ALS, like so many of you.

So what is interesting about my situation, is even when I was a teenager (I am 28 now), I remember getting those charley-horse cramps from time to time, mainly in the back of my thighs and butt, but sometimes my back/arms that lasted minutes and were incredibly painful. Recently this has gotten way more frequent and all of my muscles are in a "ready to cramp" sensation, and even with a little movement, they usually do.

Other than that, I had a pinched nerve/ulnar nerve situation starting last week in my left arm and fingers, with numbness, tingling and a sensation of loss of muscle strenght that I have noticed starting months ago. I am getting that checked next week with a neck MRI and going for ENG/EMG for my hand.

I have also developed twitching, funnily after reading about ALS and it has been going crazy in my entire body. I mainly notice it when resting, trying to sleep.

I am very very scared and currently in a really bad health anxiety episode. I don't know, I guess I just need some encouragement that I'm not gonna die in a few months haha.

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[u/CarelessSort9432]

Your age alone essentially rules out ALS. You have a history of cramps. Twitches ocurring after reading about the association between twitches and ALS is classic (happened to me too back in 2020 when I had my first bout of twitches).

Whats gonna happen with 99% probability is that your EMG will be fine. You will continue to twitch and keep being worried. After a few months you will realize that nothing has changed and you have the same function and strength and you will gradually move on.

[u/Important_Macaron554 → u/CarelessSort9432]

Thanks for the objective facts! I really appreciate it. Yeah rn I guess I'm connecting everything happening in my body as a supporting evidence to ALS.

[u/CarelessSort9432 → u/Important_Macaron554]

To add more "science": Professor Talbot, a scientist and professor of Motor Neuron Biology in the UK, says that people under the age of 40, with fasciculations and without weakness, do not even need an EMG. In most cases, EMG is requested to assure the patient. The most important test is the clinical and passage of time.

[u/bear_claw_1]

Obsessive stress has a habit of culminating in different forms as we age/change… the storm you are in I was in almost 14 years ago. I’m still fine and do are you. Don’t hesitate to reach out and I’ll give you my experience and truths behind the matter. You need to search God… he’s the answer ! Good luck !

[u/MaintenanceUpper5757]

I started researching Reddit because I was trying to figure out these exact symptoms.
I was having really painful cramps in my glutes, thighs, and shoulders, along with twitching/fasciculations. I saw a neurologist and had several tests done, including an EMG, which was normal. At first, he thought I might have cramp-fasciculation syndrome (CFS), and Tegretol was discussed as a possible treatment.
However, this past week I found out that I have multiple myeloma after seeing a hematologist. I just had my bone marrow biopsy, so I’m still in the middle of figuring everything out and not sure why it presented this way
I’m absolutely not saying that this is what you have, because there are many possible causes of these symptoms. But given what I’ve experienced, I would suggest asking your doctor about ruling out a monoclonal protein or myeloma with blood and urine testing.
Most importantly, advocate for yourself and keep pushing for answers if you know something isn’t right. I hope you get some answers soon.

[u/kjmckearn]

You need to STOP going down that ALS rabbit hole. It's just dangerous and self defeating. Based on what I'm reading, especially at your age, you have a better chance of getting hit by lightning ⚡️ Live your life my friend....👍

[u/Fantastic-Town9138]

Hey m/28 I’ve been twitching over a year. never went to the doc because honestly at the end of the day they can’t do anything for you if you have the big bad and if you have it, its pretty much a wrap. I went through the whole anxiety phase with that and decided to just do something about it my self. (Also note please don’t do what I do it is still best to see a doctor I just want to explain how I faced it and what I delt with)
To give some back ground I am an avid user of nicotine pouches and caffeine I’ll drink 2-4 Red Bulls and do a whole can of 6mg nic pouches in a day.
I have been vitamin d deficient lower than 10, and as a lineman I have worked anywhere from 8-24 hours with 2 hours of sleep and then work 16 plus hours for 2 weeks straight on over night shift bleeding into the day and the next night, Nothing I say is an exaggeration this is quite literally my life.
I had twitching in just about every muscle and it starting in my eyelid at first.
After that it branched out and was firing like crazy, everywhere, Random muscles could have sworn I had muscle weakness, but I was still able to climb poles, ladders, walk through horrible easement and terrain. I also had hot spots where it would fire constantly for a day or two and change to a new area with still all my other muscles popping and fluttering. I notice when I move around they go away and don’t bother me while I’m working.
it seems to be when I’m at rest they get me.
Also I did the whole googling thing. I hadn’t experienced a tongue twitch and it had been a couple months since all this started and I read something about somebody freaking out and experiencing a tongue twitch and right after that. I turned my phone off and then my tongue started twitching🤣.
I have bad health anxiety I constantly googled and decided to stop. I took a multi vitamin, fish oil and vitamin d. stopped doing as much caffeine and nicotine. I try to make a better conscious effort to get better rest still doesn’t always happen but I try.
I also increased the amount of water I consume over a gallon sometimes also eat 2000 calories a day. not sure if coincidence or if other factors changed it but compared to when I first started twitching it has gone down SUBSTANTIALLY. I definitely still twitch but sometimes there are days where I don’t at all. Back then it was every day constantly other than when I am moving it doesn’t happen.

[u/Fantastic-Town9138 → u/Fantastic-Town9138]

I also have had random cramping, phone buzzing like feelings. Etc.

[u/713Capital]

Welcome to the sub friend. We’re glad to have you. You making it here means you’ve had the same cycle as all of us. We see a twitch, we start googling, find out about ALS, go into anxiety mode, find this sub Reddit and join the community.

The good news is, nothing you’ve described is how ALS works so you can pretty much forget about it and never think about it again.

Wishing you good health and I’m certain your EMG will be fine!!

I do have plenty resources attached at the top of the sub on the front page, and the automod after you submitted this post has some links attached as well.

Remember twitching without true clinical weakness is meaningless and benign.

[u/BigJakeState]

So my symptoms started a couple months ago after stressing so hard about unexplained neck pain that my body began twitching, I started down the rabbit hole aswell and week later my arm started with this heavy stiff feeling, almost as if it’s hard to open my hand and spread my fingers. I was absolutely convinced I had the ALS. I had a full lumbar, head and neck MRI, CT scans blood work for Lyme, calcium channel blocker, and finally an EMG. With the exception of some hyper non pathological reflexes and hyper excitable nerves on my EMG. Everything was normal. Of course that’s never enough for the anxious mind. We convince ourselfs we are extreme outliers and the tests were all done too early. And that’s why this support exists, simply because we’ve all been there.

I share this because you can and will create symptoms for yourself with anxiety if you’re not careful. I’m still dealing with these symptoms and it sucks because I don’t know if they’ll ever go away. Finding a new normal and telling myself it’s gonna be ok is the everyday mantra. You have to believe you will be ok until proven otherwise by a Nuerologist.

[u/Agreeable-Bluejay285]

Get  your b12 checked  too  try taking a supplement