I would appreciate your opinion, but please, don't bother too much

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New member
Mar 6, 2022
Learn about ALS
Okay guys, I think it's time I post a question, even though I've been avoiding that for like 6 months now. I am very sorry for bothering you people, but I really don't have other choice now.. Just a warning, this is a long story...

I am 22 year old, and I know I have extremely low chances of having ALS, but please, hear me out first. I have epilepsy and a year ago I was at the regular checkup with my neuro, when I told him about a strange vibrating feeling down my spine when I bend my neck forward, which if someone doesn't know is a typical sign of MS. I had cervical spine MRI next day and I had something that looked like a lesion, a tumor or an injury. Few days after that I had lumbar puncture which came back clean, so he said we should wait for a year and do another MRI, but since the spot is very small it is okay to wait.

Literally 1 day after that I got this weird feeling in my leg, like it was numb or something and I got fasciculations. He is a family friend of mine, so I gave him a call instead of visiting him and he said it is just fine, it's just in my head due to stress, caffeine etc.. I have fasciculations everyday and pretty much in every single muscle, although in some more often than the others. A few months ago, I noticed that grip in my right hand is weaker than in my left hand. I knew something is wrong, but still didn't even think of ALS, even though I knew a lot about it since I'm Stephen Hawking fan.

But still, I started observing my body, muscles, reflexes etc. and I noticed atrophy of thenar and hypothenar muscles. It wasn't significant and I thought it was carpal tunnel, since I spend a lot of time on PC and phone. But just recently it progressed and it is pretty visible now. Then I started suspecting it could be ALS, although I knew there is a very small chance for that. But maybe a month ago, I noticed my right calf and biceps are shrinking, biceps is like 1.5cm shorter than my left one. Went to neuro and he said I had a little overactive reflexes, 2 on standard scale, so it's still not considered hyperreflexia. Had an MRI done, but it was the same as last year. Not a single millimeter different than the previous one. And I was like "okay, that's great, it's some injury or something."

But then I got dysphagia 10 days ago. Not globus, dysphagia, food is stuck in my throat and impossible to swallow until I drink some water, way harder to swallow pills etc. and noticed foot drop, I can't fully lift my toes, and the difference is visible. Then 3 days ago, I was doing some exercises and I bend my neck to the right, after which my neck muscles got stuck, almost impossible to move, fully contracted. It took them like 20 seconds to fully relax again. That's pretty much it when it comes to my symptoms. Nothing else significant.

Now there is another thing I would like to say, my mother also has thenar atrophy on both hands, just recently noticed it. She went to neuro, but to a different one because mine is epilepsy specialist. She scheduled and EMNG for 14th march and I am hoping that's when I will find out what's wrong with both of us, since whatever it is, it seems we both have it. Her hands are weak, but she also has pain, which is relieving, since most often ALS does not cause pain that early. Her neuro said it is either a liver issue, since she has them, but I have no idea how could that be connected to atrophy, or some sort of neuropathy, which is what I am hoping for..

Now again, I am terribly sorry for bothering you PALS, FALS and everyone and I would be sincerely grateful for only 1 response. I really tried to avoid posting here, but I don't know what else to do.

Thank you very much, stay strong and I love you all great warriors.
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It is very unlikely that you and your mom both have ALS, or even that you both have the same thing, and there's no evidence that either of you has anything seriously wrong at all.

I am sure that both your exams will be reassuring. If you are taking medication to reduce your seizures, it is always good to re-evaluate it periodically because there can be side effects and things change.

Meanwhile, I would suggest that you only move your neck when you have a "neutral spine" (straight up and down, but relaxed). Necks can be finicky even in healthy people.

Not a chance that all of your symptoms and your mum's would point to ALS. Who diagnosed you with foot drop and dysphagia? That is something that can be found immediately upon clinical examination, but you cannot diagnose yourself with these. Why are you looking at a disease like ALS? By that i mean, what makes you think you have ALS with the absence of ALS symptoms? It must be terribly stressful for you to be worried about such a disease, but from what you've described, it does not one single bit sound like a motor neuron disease.
Thank you very much, I saw your answers on like every single post I've read, and this coming from you is pretty reassuring. I will speak to my neuro about medications, you might be right!
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