coconutgun
New member
- Joined
- May 22, 2023
- Messages
- 5
- Reason
- Learn about ALS
- Diagnosis
- 00/0000
- Country
- US
Hello everyone,
Kinda freaking out here. 28 year old male.
Back in 2019 or so, I had my first anxiety tangle with ALS. Twitching all over, "weakness" in my right (dominant) arm, the usual suspects of symptoms. I had two different EMGs done back then, both clean. So, I put my ALS worries behind me and started living my life again.
That is, until a few weeks ago. After 4 years of peace, the possibility of ALS has again reared its ugly head. It started up with twitching, which I hadn't felt in a very long time. Besides that, though, a new feeling of stiffness and weakness made its way to my right hand, especially affecting my thumb and my index finger. They feel weak, simply put. The whole hand feels clumsy and movements feel imprecise. I can still eat with utensils but a spoon feels like it weighs 50 pounds - I never felt that all those years ago when I first worried about ALS.
Besides that, I've seen some definite atrophy in my right trapezius. My wife was actually the first to notice it - my neck dips down smoothly on the right side now, it no longer has the muscular bulge my left side has. Touching my right shoulder, it feels bony - significantly more than my left does.
This has led to a feeling of weakness in my neck. It hurts to keep my head up, and I find myself supporting my head with my left hand when I'm sitting at my desk on my computer.
A few weeks later, I noticed some atrophy in my right wrist. You can now clearly see some tendons in my right wrist that just... don't appear in my left wrist. The veins of my right wrist/palm are now very visible, whereas they're still pretty sunken in/hidden on my left. My right arm twitches pretty much all the time now, from my shoulder to my fingers. I'm pretty sure my thenar and FDI have started shrinking, though my wife doesn't seem to agree with me on that.
I'm not at the point where I'm dropping things, but my right arm is a shell of what it used to be. Picking things up tires my arm out immediately - if I go to the gym and do an arm workout, my left arm will feel sore for a day or two and get back to feeling fine. My right arm will feel like it's been worn out for nearly a week before it feels like itself again.
I went to a headache neurologist about a month ago for a different issue (migraines), and I told her I was worried about arm weakness and atrophy. She tested my reflexes and noted I had "very strong" reflexes everywhere, although she seemed happy about this? I think I've had brisk reflexes for years now so this wasn't a surprise. She did the usual strength tests, and though I didn't fail any, my right arm/hand was barely keeping up with my left. She said if I kept feeling bad I should see a neuromuscular specialist.
I have an appointment with a neuromuscular specialist set for June 13. I'm deathly scared of it. My family thinks I'm nuts because I'm just "repeating" the fears I went through back in 2019 - I understand where they're coming from, really. I wish I could convince them that this feels significantly different now than it did back then. The incessant feeling of weakness, the nonstop twitching...it scares me. The atrophy in my right hand and forearm scares me. The twitching in my right hand/forearm/arm/shoulder/neck that I feel when I'm sleeping scares me.
This morning I tried opening a pill bottle with my right hand and I just...had a really hard time with it. I tried it with my left and opened it without a problem. To be clear, I'm still able to use my right hand - haven't lost any motor function yet. Things just feel a lot more difficult. I know ALS is about failing, not feeling, but this is my dominant hand... it shouldn't be this difficult. I shouldn't have a thinner thenar eminence on my dominant hand. I shouldn't have a thin FDI on my dominant hand. The fingers in my right hand tremble a lot - I can bring them close together, but at rest, they fan out a lot more than do the fingers on my left hand.
I shouldn't have a hollowed out trapezius on my dominant side. My right bicep feels mushy and flabby - my left feels strong and firm as ever.
I'm sorry for the wall of text. I just want to know if these symptoms that seemingly ambushed me out of nowhere are cause for concern. I don't want to die this young. I just got married in December, I'm supposed to be starting law school in August, and I'm terrified that I'm going to miss out on life because of ALS.
Thank you for any help you may be able to provide. There are truly good people on this website. I'm sorry if I seem like an anxious mess...I hope you understand where my fears are coming from.
Kinda freaking out here. 28 year old male.
Back in 2019 or so, I had my first anxiety tangle with ALS. Twitching all over, "weakness" in my right (dominant) arm, the usual suspects of symptoms. I had two different EMGs done back then, both clean. So, I put my ALS worries behind me and started living my life again.
That is, until a few weeks ago. After 4 years of peace, the possibility of ALS has again reared its ugly head. It started up with twitching, which I hadn't felt in a very long time. Besides that, though, a new feeling of stiffness and weakness made its way to my right hand, especially affecting my thumb and my index finger. They feel weak, simply put. The whole hand feels clumsy and movements feel imprecise. I can still eat with utensils but a spoon feels like it weighs 50 pounds - I never felt that all those years ago when I first worried about ALS.
Besides that, I've seen some definite atrophy in my right trapezius. My wife was actually the first to notice it - my neck dips down smoothly on the right side now, it no longer has the muscular bulge my left side has. Touching my right shoulder, it feels bony - significantly more than my left does.
This has led to a feeling of weakness in my neck. It hurts to keep my head up, and I find myself supporting my head with my left hand when I'm sitting at my desk on my computer.
A few weeks later, I noticed some atrophy in my right wrist. You can now clearly see some tendons in my right wrist that just... don't appear in my left wrist. The veins of my right wrist/palm are now very visible, whereas they're still pretty sunken in/hidden on my left. My right arm twitches pretty much all the time now, from my shoulder to my fingers. I'm pretty sure my thenar and FDI have started shrinking, though my wife doesn't seem to agree with me on that.
I'm not at the point where I'm dropping things, but my right arm is a shell of what it used to be. Picking things up tires my arm out immediately - if I go to the gym and do an arm workout, my left arm will feel sore for a day or two and get back to feeling fine. My right arm will feel like it's been worn out for nearly a week before it feels like itself again.
I went to a headache neurologist about a month ago for a different issue (migraines), and I told her I was worried about arm weakness and atrophy. She tested my reflexes and noted I had "very strong" reflexes everywhere, although she seemed happy about this? I think I've had brisk reflexes for years now so this wasn't a surprise. She did the usual strength tests, and though I didn't fail any, my right arm/hand was barely keeping up with my left. She said if I kept feeling bad I should see a neuromuscular specialist.
I have an appointment with a neuromuscular specialist set for June 13. I'm deathly scared of it. My family thinks I'm nuts because I'm just "repeating" the fears I went through back in 2019 - I understand where they're coming from, really. I wish I could convince them that this feels significantly different now than it did back then. The incessant feeling of weakness, the nonstop twitching...it scares me. The atrophy in my right hand and forearm scares me. The twitching in my right hand/forearm/arm/shoulder/neck that I feel when I'm sleeping scares me.
This morning I tried opening a pill bottle with my right hand and I just...had a really hard time with it. I tried it with my left and opened it without a problem. To be clear, I'm still able to use my right hand - haven't lost any motor function yet. Things just feel a lot more difficult. I know ALS is about failing, not feeling, but this is my dominant hand... it shouldn't be this difficult. I shouldn't have a thinner thenar eminence on my dominant hand. I shouldn't have a thin FDI on my dominant hand. The fingers in my right hand tremble a lot - I can bring them close together, but at rest, they fan out a lot more than do the fingers on my left hand.
I shouldn't have a hollowed out trapezius on my dominant side. My right bicep feels mushy and flabby - my left feels strong and firm as ever.
I'm sorry for the wall of text. I just want to know if these symptoms that seemingly ambushed me out of nowhere are cause for concern. I don't want to die this young. I just got married in December, I'm supposed to be starting law school in August, and I'm terrified that I'm going to miss out on life because of ALS.
Thank you for any help you may be able to provide. There are truly good people on this website. I'm sorry if I seem like an anxious mess...I hope you understand where my fears are coming from.
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