Could this be ALS?

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New member
Dec 12, 2022
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Hi, I am 21 years old and the last few months have been the worst of my life and I would like to hear your opinion on my situation, whether my fears are justified or I am stressing myself unnecessarily.

On 30.8.2022 I started to feel dizzy, this dizziness continued for the next 14 days when it appeared mainly in the morning. Neurology found that I had a prevalence of reflexes on the right side of my body and reduced ventral reflexes in my right hypogastrium. Further, a 6-7/8 tuning fork palpesthesia was found on the right leg, the strength was symmetrical on both upper and lower extremities. Pyramidal signs both spastic and irritative were negative .On the basis of this examination I was sent for MRI on 16.9 due to suspicion of MS. Between 13.9 and 16.9 I had blood tests, ECG holter and carotid ultrasound. The results of these tests were normal.

The results of the MRI were negative, but the doctor still recommended a lumbar puncture whereupon we decided that I would see another neurologist on 10/1/2023 to give his opinion on whether a lumbar puncture was necessary. Since then, in early October I looked into the reason for the hyperreflexia on one side of my body and was diagnosed with ALS disease, since then I have been experiencing three months of twitching muscles variously around my body, calves, thighs, flat of my feet, back, arms but mainly on the right side of my body. Also, since the summer I have been suffering from occasional twitching of the fingers on my left hand, especially the index finger which twitches all over. Of course I have linked this to the fasciculations in ALS. I also get occasional finger weakness on my left upper extremity that is sometimes absent or unnoticed.

From then until now I search the internet almost daily for anything to do with ALS, three weeks ago I was forced to go to a psychiatrist where I was given antidepressants. I didn't mention to the neurology doctor about the low back pain on my right side when bending over after an injury. I also occasionally have tingling or tingling in my lower extremities which I have to break up. Since this examination I have lost 8 pounds because I am eating less due to impaired swallowing and also have an increased vomiting reflex, but this all came about after I started dealing with this disease. I find I am congested and have an occasional hoarseness in my voice but no one has told me I speak differently or that I sound drunk.

My concern is actually that my illness was discovered by accident because I didn't go to the doctor with any of these problems. Everybody i told my problems told me that I was examined by neurologist and if she had some suspicions she would not just say "I would do lumbar tap to be sure about MS" and would examine me more.

I know that sensory symptoms are not common in ALS and at my age of 21 this disease is not that much of a threat but I can't shake this feeling.
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I am guessing the diagnosed with ALS was a translation issue. It sounds like you decided you had it not that the doctor examined you did tests including an emg and told you you had ALS.

if the doctor suspected ALS she would have told you. If you were supposed to see another doctor to decide about an lp then please do so. You can ask them their opinion
Yes, sorry that is translation issue. You are right.
I asked what she thinks it could be and she said MS, because of that I went to MRI.
And yes I am going to see another doctor about lp and ask her if she thinks it could be ALS, but I dont wanna be someone who dont trust doctors, I just wanted reassurence. But I needed to vent my issue.

Really thank you for your time and reply.
I think you need to take a really big breath, stop still for a moment and then let it out slowly.
OK, then go back to your doctor and start being honest.
Spend time with the psychiatrist and really be open and honest. If you can eliminate some of your fear and panic and stop trying to be a doctor and diagnose yourself, your symptoms may subside a bit and make it easier for doctors to figure what physical issues are going on.

The chances it is ALS are nearly zero (and we never say they are zero, not even doctors will say that).
Start allowing doctors to help you return to health. Being here and googling is the worst thing you can do now.
I wish you the very best.
Thank you, I also written to BFS forums and they reassured me as well. From the moment you gave me an answer and said those things to me, I am more relaxed and I do not feel many of the symptoms. Still I have the appointment in january and I will be able to get some info and ask her what she thinks.

You are really good people and thank you for your help. I will try to stay away from this forum, but just wanted to thank you for what you are doing for people like me.
Hi, I am still waiting for the exam. I have twitches all over my body, left thigh, right thigh, left biceps,right biceps than finger on left hand. I read that ALS starts with hyperreflexia and weakness on the same limb. I have higher reflexes on right limba, I know how it sounds but I feel my hand different my fingers are little clumsy but I can button shirt and turn keys in lock with that hand. On the exam in september my neurologist tried my muscle strength and in report is written that strength is symmetrical. I can move fingers and lift my toes on leg also. I am really scared of that exam, I am going to ask the neurologist if she thinks that it is possible to have this disease. Also my neck on right side is painful and the pain propagates sometimes to biceps. Also my lower back is painful. Can you please clarify if I am just wasting my time on something that I dont have?

So you think after three months without having clinical weakness in my age I should be okay? The assymetrical hyperreflexia is really scaring And I dont know what to do about it. Really thank you for your time.
You are wasting your time on something you don't have.
Toklicz… You’re 21 years old, the odds of someone that age having ALS
are at least 6 digits against it. Yes, it has happened so very rarely after
more than one EMG, numerous tests and second opinions. That is not you
but here’s something to reflect…

“I will try to stay away from this forum, but just wanted to thank you for
what you are doing for people like me.”

Well that ain’t working.

“I am going to ask the neurologist if she thinks that it is possible to have
this disease.”

I hope you’ll be emotionally prepared of what she may say to you when
you throw that one to her.

I hope the path out of all this comes to you soon. You're too young to
be chasing a terminal disease you have no real signs of.
After clinical

Hello, today was the day of my second clinical. I told the neuro all problems I have and also that I am scared of ALS. I did not mentioned the twitching because it dont stress me out as other things and as it is all over my body after my ALS fear started. The clinical was clean unlike last time where I had unilateral hyperreflexia. Today hyperreflexia was bilateral on legs, she thinks it is just because of stress. She specifically told me that she dont see ALS or MS on me. On my report is written that no upper or lower motoneuron lesions were found. However She sends me to EMG of my right leg because of pain in the lower back, she suspects pinched nerve. So now I hope I can again live my life. Thanks to all, you will hear from me after the emg and my final neuro diagnosis.

Thank you for what you are doing and I hope you are doing fine, you really helped and you are the real heroes. I will definitely send some money to people with this disease as it really strucked me in this four months.
That is such great news!
She is right, hyperreflexia can have many causes, including stress, and can be there one day and not the next. That is why it is not diagnostic of anything on its own. Just like twitching with no other symptoms is not.

The EMG is a tool used to help diagnose a huge variety of disease and injuries, so this is a good path they are now taking.
All the best.
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