Abrupt symptoms, confined to upper right limb. Scared.

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coconutgun

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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.
 
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Congrats on your marriage and acceptance to law school. I deleted your photos because they are not helpful. Evidently you showed your R hand to a neurologist who was not concerned with its strength, tone or flexibility.

I expect your neuromuscular visit to be reassuring as regards ALS. The highest-probability explanations for what you describe are poor positioning, overuse injury, and/or an old injury that has been exacerbated. An EMG and subsequent hand therapy may be helpful.
 
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Hi there, thank you for taking the time to read my post.

I guess another symptom that's really concerned me is some intense fatigue I've been experiencing over the last month and a half or so. I've had sleep apnea for sometime, but I recently had my machine looked at and it's working fine. But I am feeling DRAINED lately, to the point where I pretty much need to nap once I get home from work. Utter, draining exhaustion around the clock.

I've also noticed my right bicep feels shorter than my left. Like, the head of the muscle starts and ends further away from the joint than does my left bicep.

To make things worse, I've noticed my right thenar feels...bony? At least, compared to my left. Same goes for FDI. FDI on the left feels nice and plump, it feels shallow and thin on the right. Sorry if the pictures I attached didn't show that, I understand why you deleted them.

My brain fog has been TERRIBLE as of late, so there might be some more stuff I'm missing....apologies...

But, could those all be additional strikes against me as far as having the early stages of ALS goes? I freely admit my anxiety has gone through the roof over this, and I know psychosomatic symptoms are a real thing, but this feels nothing like something that could be triggered by anxiety...I'm just worried, is all...
 
Your xPAP settings could need adjusting even if your machine is "working fine." Whoever told you that isn't you.

It's not set and forget. OSA can certainly lead to fatigue/brain fog if not adequately treated. It's practically a cliché when that happens. You can titrate the IPAP or overall pressure up 1cm at a time, stop and reassess. Sometimes, you even need to go the other direction. Check/clean your mask, hoses, and filters (machine and home furnace). Etc. Masks degrade and then you need a new one.

The rest of what you've said may not have been triggered by anxiety, but it definitely sounds like anxiety is feeding it. There's no there there.

You're still ahead in the count, believe me. Stop reading about ALS. Instead, do something nice for yourself (therapeutic massage? nature walk? museum visit? ) and/or someone else while you await your appointment.

Best,
Laurie
 
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Hi again,

Thank you for the reply - it really means a lot.

I'm still awaiting my appointment on the 13th and doing my best not to dwell on the symptoms I'm feeling; that said, since yesterday I've felt a sort of stiffness around my mouth. Not sure if this is just tension or not. And, for the first time in my life, I noticed tongue fasciculations earlier today. It's a small spot on the midline of my tongue that twitches rapidly when I open my mouth - it goes away after a few seconds, and then my tongue is still. But it happens *every single time* I open my mouth wide. I'm not sticking my tongue out - I'm just opening my mouth wide and examining my tongue at rest. I do know that the tongue is usually associated with bulbar symptoms, but I've been having symptoms in my hand/arm/shoulder for longer. So I'm not really sure what the deal is...

Would this be whatever potential MND is in my arm "spreading" to my mouth/neck? Or is it just anxiety making my tongue flicker like that? I definitely have noticeable atrophy in my right trapezius, and the tongue twitches are just to the right side of that line running down the middle of my tongue....

Sorry to bother, I know I should just wait to see the doctor, but the wait between now and then is eating away at me. Hope you've been having a good week.
 
You say "I'm terrified that I'm going to miss out on life because of ALS." Well guess what, you are already doing that and you don't even have ALS!

How many hours a day do you spend thinking about ALS or researching ALS? I bet it is a lot.

The only useful thing you can do before your appointment on June 13th is to start addressing your health anxiety. It is very clear that health anxiety is something you struggle with and it is something you can work on. Find a health professional to work with. No matter what health issues you actually have (I don't think you have ALS, in case you were curious), you will have a better life if you can get your anxiety under control. And the people on an ALS forum can't help you with your health anxiety (in fact, searching this forum will only increase your anxiety). And there is nothing for us to add about your symptoms before your appointment with a neuromuscular specialist.
 
I'm sorry if it seems like I'm just anxiety dumping on you all. My bad.

For what it's worth, I met with a psychiatrist a few days ago and started taking Sertraline this morning. Hoping it helps. Currently looking for a psychologist/therapist to help address my anxiety.

I'll stay off the forum until after my appointment. Have a great weekend to anyone reading this - doubly so if you're a Panthers or a Heat fan.
 
Hi everyone,

Had my clinical exam yesterday. Totally normal besides some brisk reflexes (chalked up to anxiety).

Had the NCV and EMG today - EMG was clean. I couldn't believe it. Whatever is going on is maybe a cervical issue or a deficiency of some sort, but it would appear I can put the ALS fear behind me. I know that's easier said than done, but I hope anyone who comes to this thread worrying like I did can find peace in that it's not the worst case scenario we're all fearing. Thank you to all those who replied to this thread. Wishing you all well.
 
Thank you for letting us know. Have a long and happy life
 
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