Hi all , I am a 35 year old male , and I am really concerned that I have ALS, very scared please help!


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May 24, 2024
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Hi all just looking for help, so frightened and scared.

Reasons I have for thinking ALS are that about 8 months ago I noticed a persistent twitch in my left lat muscle , was on and off, and then went away. Then a friend noticed my left thumb twitch and or shake which was odd , this has now spread to the whole hand shaking. Also in the right hand , arms feel shakey too.

At the time I was taking a medicine called Stemetil because I had quite bad Eustachian tube dysfunction and got dizzy and nauseous for a long period , and had mri to check for ear and brain abnormalities, all came back fine. Stemetil can make you shakey , but I also developed twitches, so GP took me off the tablet. However things got worse. I got pains in my sides , which I could only describe as feeling like a stitch from excercise. This would alternate or sometimes be both sides at once, like minor spasms maybe. First in the lat muscle , and now they are everywhere, from feet to face , jaw, kneck, pecs, thighs ,calfs.

I have been for numerous tests. I was concerned about kidneys due to the odd side sensations I was having , so bloods and urine test were done and ultrasound of the kidneys. All come back fine except lower than normal phosphate levels, so new bloods done on Wednesday to check hormone and vitamin levels. Waiting for those results.

Discussed my concerns with the Dr and he isn’t concerned that it could be ALS , he out it down to anxiety and stress , and has prescribed lexapro. I do fear he’s over looking this but admittedly I am an extremely anxious person. However , also in the last 2-3 months I have been frequently waking at night and feeling extremely fatigued.

Regarding weakness I would say I feel weak and muscles in legs shake when doing basic things like bending down for a period of time or doing yoga. Arms are the same. My left thumb definitely seems weaker and left arm around the elbow joint , but no atrophy that I can notice. Muscles in the quads randomly ache and left leg feels kind of numb at times. Also experiencing a weird tingling like sensation in at the back of my left shoulder when in certain positions. In the last few weeks getting like what I can only describe as these like body jerks , in the legs , arms , and torso and kneck. Just yday I got twitch’s in my kneck and throat but my throat has felt like it has a lump in it ever since. Swallowing and breathing have been weird since.

I know a lot of this could be down to chronic stress and extreme anxiety but just looking for some help and guidance , does this sound like ALS ?
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Sorry you find yourself worrying about your health. Have a read of this link: Read Before Posting. Based on what you've posted, your doctor is entirely correct that it doesn't sound like ALS.

In the link you will read that twitching absent the hallmark symptom of ALS, clinical weakness, means you're looking at some other reason for your symptoms. You also report sensory issues like tingling, numbness, aching, which point elsewhere. It is more likely, from what you've posted, that you are experiencing the after effects of a virus (the Eustachian tube issues).

Take care
Hi there , thank you so much for your reply.
I really appreciate it.

Would you advise pushing the Dr for a referal to see a neurologist?

Just asking because the ETD scenario occurred over a year ago and the ENT treated me for it.

It just seems that I have something progressive , again everyone around me says it’s just health anxiety , it’s scary that I don’t have any relief from any of the symptoms.

The last few days my breathing has been scary, I got a jaw jerk followed by a twitch in my throat , and I’ve been feeling like I’m struggling to breath .

Thank you so so much again.
If you are worried, return to the doctor. They can tell you if a referral to a neurologist is warranted. What you have reported here is not associated with ALS, so you would need to speak with your doctor.
Lexapro is not exactly a recipe for sleep problems.

I agree that this sounds nothing like ALS.

I would ask about a sleep study, which can be done at home, to make sure your breathing and movement are normal in sleep. I would also make sure your electrolytes and thyroid levels were tested.
Thanks for the reply , are muscle cramps common in als ?im getting quite bad cramps in my forearms.

I had thyroid checked and came back clear , just really phosphate levels , been taking 500mg of Sandoz phosphate tablets as prescribed by doctor.

Thanking you in advance.