Terrified about possible ALS symptoms

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Hello everyone.

First of all and before saying anything else, I wanted to say I really admire the PALS and CALS, you are all very brave and courageous and I am sorry for what is happening to you.

I have been going on this website quite a lot lately and been wanting to post on this forum but have been too ashamed to do so. However, I have reached an all time low in my life and need to know whether my symptoms could be ALS or not.

To start with, I am a 21 YO female (soon to be 22) and I do have health anxiety (I'm seeing a therapist and used to take medication for it).

My symptoms started in November last year (2019). One day I got a random pain in my left arm. I didn't think too much of it at first, however I made what I now call the worst mistake of my life which was watching a documentary about ALS. I didn't really know what it was at the time and learned what it was in the documentary. At one point, a doctor said that it was a very rough and difficult diagnosis to give to someone because it is a terminal illness, and she said it was especially hard when the person was young and just came to their doctor because he/she had shoulder pain. This struck me immediately and I was certain the arm pain I was experiencing since a few hours was due to ALS. Since then, the possibility of having ALS didn't leave my mind and has made my life miserable.

The arm pain I had stayed for months, it was so strong I was waking up in the middle of the night because of it and the pain killers didn't do anything. I soon started to feel weaker in that arm and was sure it was because of ALS.

I then started to get symptoms in my left hand: I would have twitches in my fingers (especially my thumb) and feel weak and clumsy. I felt like my muscles had atrophied, my hands had tremors...

I talked about my fears to my GP who, seeing how worried I was, referred me to a neurologist. I saw him in February this year. He really couldn't understand why I was here, for him I didn't have ALS at all and I actually didn't have anything. He performed a physical neuro exam and refused to give me an EMG when I asked for one because he couldn't see any weakness. He told me I was fine and send me away.I actually got better after this appointment for about a month. From what I can remember I didn't have any symptoms anymore and was relieved I did not have ALS.

However, when the Covid-19 blew up in Europe in March I suddenly found myself staying home all the time and having my uni courses at home and it was a very stressful time and the symptoms came back.

At first, only the arm pain came back but then the hand symptoms also came back stronger than before; I was once again certain I had ALS.

It was around that time I think that I started having pain in my left forearm and elbow and my left pinky and ring finger would get numb quite easily. I still have this today; it happens mostly when I'm lying down on my back and holding my phone and it hurts a lot.

The symptom that scares me the most is that sometimes my left hand will shake quite strongly, either when I'm holding something or for no reason (I get it early in the morning now and it wakes me up). I'm not sure if it is like a massive fasciculation that makes my entire hand shake or shaking from the weakness that I could have because of ALS. The shake lasts for a few seconds and during and afterwards I have an intense weakness sensation in my left hand (this happens only in my left hand).

As of today, I have symptoms all day long: I feel weak in my left arm and hand (for example even typing right now feels difficult for my left hand), I have these intense shakes almost every morning now (they wake me up because they're so strong - but I also get them during the day or at night) and I also started to develop symptoms in my right hand: I sometimes wake up with a numb right hand and last night I got twitches in my right thumb. My hands both feel stiff and hard to move.

I also have been getting hypnic jerks (you normally get them when you're trying to go to sleep and you have a falling sensation and your whole body shakes) but during the day: my legs or my shoulders will kinda jerk on their own and it terrifies me.

I haven't talked to my GP about my new symptoms yet and I wish I could see a neurologist again because of my new symptoms and get an EMG to have a clear diagnosis, but I am too afraid to do so, seeing how he dismissed me last time and I'm also terrified the EMG will pick up ALS...

Therefore my question is: could my symptoms (according to you) be caused by ALS (especially the hand shaking thing which is what I'm most worried about as it is a new symptom I started to get recently and didn't have yet when I saw the neurologist in February)?

Thank you so much for reading if you have managed until the end, I tried to be as thorough and precise as possible in my symptoms and I hope I didn't forget anything.
 
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lgelb

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My answer to your question is no.

My best advice is to see a physio about your hand/arm, as you may have a repetitive motion injury or other localized issue. You might also want to record yourself sleeping to see if you jerk a lot during sleep. If so, a sleep specialist can help.

A counselor, even online, can help with your anxiety about ALS and perhaps other aspects of your health, before they take over your life.

The neuro sounds very sensible to send you away without an EMG. You will be equally sensible to send yourself away from these forums, because you don't belong here -- lucky you.

Best,
Laurie
 
D

Deleted member 42017

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Thank you so much for replying, this means a lot to me!
I just want to precise that the hypnic jerks happen during the day when I'm awake and not at night. For example, I'll be sitting in a chair with my legs crossed and one leg will kinda jerk on its own; that is why I specified in my post I had this, I don't know if it could make it relevant to possible ALS or not.
But thank you so much, you are relieving me already, I will definitely try to calm down about it to see if my symptoms go away (hopefully)! and see someone about the hand issue.
 

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No myoclonic jerks while awake are nothing to do with ALS. Please let this go and get help to find out what is going on, but it is nothing like ALS.
 
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