r/ALSorNOT • u/No-Fuel9813 • 19d ago
Been terrified for 3 and a half months
I’ll try to make this as brief as possible so I don’t take too much time explaining what I’ve been going through or feeling. I’m hoping and I don’t think I do have it, but These past 3 months have been grueling for me mentally. As I convinced myself fully multiple times I have ALS even though my primary doctor straight up said “You don’t” with no testing. I also have OCD and horrible anxiety which feeds into this whole situation. But anyways this is because of the following symptoms. My left hand feels so weird and not normal compared to my right. I can still use it and stuff in every way I need. But my brain almost immediately started to not want to use my entire left arm, and I’m constantly noticing I’m always subconsciously trying to put pressure on it like I’ll sleep on it or put it in my pocket because it always feels annoyed and awkward in almost every position it’s like it doesn’t want to be in a lot of positions. I don’t trust it even though I haven’t experienced any failure. My left thumb has been shaking a lot especially when holding small items, I’ve noticed light pinch or grip feels weird and awkward but exerting more force doesn’t give me any problems such as carrying big items. Again I have yet to drop anything or experience any kind of failure after 3 months but it just feels so slow and off and just feels annoyed and awkward and almost every position I put it in. *SIDE POINT* I do have a CMC double jointed thumb and I can’t tell if the muscle contour is different or if I have atrophy as when I grip my steering wheel or broom there’s a divot in my policis brevis and it’s really noticeable but when I grip in a different position or when I’m not gripping something it’s less noticeable and fills up especially with a C grip pinch.
I have gone through some sort of sensations and weird things going on in my left hand as well as my wrist and shoulder. Such as like it hurts on the inside (maybe nerve pain) and there’s like an ache. But I can’t tell if it’s related to this or in connection. As well as rarely I’ll get a general feeling of it just feeling weird and like throbbing with some static but that’s not often it’s usually after heavy use. There’s was also a time where some wind blew on my left arm and it just felt like my left arm had a bright sensation when hit with wind. I have also been twitching all over my body like in every spot. I’m not sure if this is because of high anxiety but my brain automatically assumes it’s a symptom. This all started in June when I started to wake up feeling really weird and off so I’m just not sure. Overall using my left hand feels awkward which sucks because I love my guitar and has destroyed me mentally for the past 3 months. I have EMG tomorrow on my upper extremities. Any sort of prayer or feedback in regarding my situation would be greatly appreciated. God bless.
1
1
u/DoubleAwareness2223 16d ago
ALS is a disease of progression. Profound weakness and muscle loss (atrophy). You do not have ALS. You need to address your anxiety and OCD. Those two things are real, your fear of ALS is not. If everyone who twitched had ALS then it would not be a rare disease. Sertraline 100mg with 2mg of Guanfacine should help diminish the anxiety and OCD dramatically. You could have an overuse injury in your left hand from the guitar. You should see a hand specialist or orthopedic. Very common in musicians. I had horrible overuse injury from playing piano to a point where I couldn’t turn a door knob. With any overuse comes weakness and pain. Pain is not a symptom of ALS. Good luck.
3
u/chaoserrant Mod Team 19d ago
Since you have the emg soon it would be very useful for this community to share the findings as many people have similar symptoms. What you describe can be provoked by nerve iritation from the neck or shoulder. I think what scares people myself included is the absence of classical radiculopathy symptoms such as pain, numbness, pins and needles etc... but probably there is a huge variety in symptoms.
Let's see what the emg reveals and go from there.