I am terrified I may have ALS.

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Anthony_P

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I am an absolute nervous wreck. I struggle to get through every single day without feeling like I am living a complete nightmare. I am 27. Male. My mother died from ALS in 2015 after being diagnosed in 2012. She was the strongest person I knew. She was the only person in the family that has ever been known to have had the disease. Her mother (my grandmother) has Parkinsons and is managed her symptoms.

I have been terrified every single day since I saw my mother waste away from this disease. If it took her like that, it should have no problem with me. I feel like my symptoms I am experiencing are indicative of ALS. I am begging, foolishly to have someone give me some hope here and would love nothing more than to be told how wrong I am. My mental state is the worst its been all my life and I should be living my best life. I recently married the love of my life in 2021, just bought a house and when the time is right, want to start planning a family and cannot fathom hearing I may only have a short stretch left. I don't want to die.

I feel as if I have always had something I noticed. Weather it was minimal muscle twitching, or weakness in a particular limb or specific area of the body. Recently, my scare has risen to new heights. My first observation had came after I was done playing a flag football game. I was in my car and realized i had a very sharp pain and weakness in my left wrist (non dominant) to the point to where I couldnt raise or flex left wrist at all. The pain persisted for many days after and about a week or 2 after that, I had been training in Jiu Jitsu and had someone grab hold of my left wrist. When trying to pull away, I felt 3 very painful "pop pop pop" and felt as if i had no stability in the wrist. This was all happening around end of March, 2022.

I had understood I had done something bad when I realized the pain, instability of the wrist, and range of motion being limited for multiple weeks. It looks now as if I have noticeable muscle atrophy in the wrist, hand, and forearm. I experience muscle twitching (my absolute worst nightmare) only on my left arm. Be it bicep/tricep/forearm/muscle at base of thumb where it meets the wrist ('flexor pollicis brevis' for the medical nerds out there). Again, no feelings of twitching or weaknes in my dominant right side, only left. On top of that, I am not able to get the same strength I am used to out of my left bicep/tricep (really the whole arm) as opposed to my right. I am, near effortlessly able to curl 30 lb dumbells with my right, and near impossible to curl the same weight (or even 20 lb kettle bell) with my left.

And only yesterday, I had experienced weakness in my left tricep when even just trying to flex it as tightly as I was able to my right. I tried over head tricep dumbell extensions and had to put so much more focus and energy to getting even one rep in on my left as opposed to my right, which was near effortless again. A combination of unstable wrist, loss in pinch grip, weakness in forearm, weakness in bicep/tricep, muscle twitching, noticeable muscle atrophy when compared to right side, and feeling left arm muscle being more soft as opposed to the more dense right side are putting me through the worst kind of hell I can possibly imagine. I feel as there is no explanation for my symptoms besides being stricken with this evil disease. I do not have even half the strength as my mother did. Please. Please someone tell me I am wrong and that I am out of line. I am begging to be told I am wrong and that this is not indicative of ALS. I cannot begin to focus on my life or enjoy any day without the fear of this disease overwhelming every waking second of my day. I have a neurology appt scheduled for July 11th. I dont know what else to do.
 

wishmobbing

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Dec 5, 2017
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First of all I am very sorry you lost your mother to this disease. She sounds like a person who's absence is noticable. The grief of this alone can send you into the downwards spiral.

Many people who develop health anxiety, develop an immense fear of the disease a loved one died from.
You wrote that you always felt there's something going on. This speaks against ALS. It shows me that you have a very fine-tuned introspection, so a small twitch others won't even notice is a very noticable sensory impact. Especially under stress small bodily phenomena can be perceived as really troubeling.

You already have the neurologist appointment coming up, that's good to get a proper check and rule out ALS or other physical causes. Since you might have hurt your wrist doing sports, an orthopedist would be my first choice of doctor to take a look at your left arm.
Take care!

Since there are no other cases in your family it is highly unlikely that you too are stricken by this. Since fear seems to dominate your life right now please seek psychological counseling that can really help you to cope with anxiety and unprocessed grief.

I'm sure you'll be there to live a happy life with your wonderful wife and be a fun and reliable dad to your future children.
 

Anthony_P

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Joined
Jun 14, 2022
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Learn about ALS
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AZ
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Queen Creek
I am so grateful for the message. I wish I wasn't such a lunatic about this but I am trying to be present and just feel so overwhelmed with this being such a dominator of my every day of life... Thank you for taking time to leave a response on what may to youjust be another random guy, but to me this is the whole universe. What things should I pay attention too when, and if an EMG is scheduled?
 

wishmobbing

Senior member
Joined
Dec 5, 2017
Messages
868
Reason
Lost a loved one
Diagnosis
07/2017
Country
DE
State
BW
City
Stuttgart
You're not a lunatic but you mind is a powerful thing and deserves being well-looked after.

I don't think you need to pay attention to anything concerning a possible EMG. Your job as a patient is to be open and to trust a trained professional with years of experience. If after a clinical exam and talk about your family history and symptoms they do find no reason for an EMG that's just as well. Always ask what might cause your distress and of they find nothing in their department ask for advice on which steps to take next.
 
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