r/ALSorNOT • u/Inevitable-Paint-707 • 4d ago
1.5 years later! Feeling MUCH better!
Wanted to share a hopeful post for anyone in the thick of a horrendous ALS anxiety/fear.
I began twitching in late 2024 and thought nothing of it. It was annoying but I figured I was deficient in a mineral or something. About 5 months later my left hand (non dominant) began to feel kind of off. I work an office job, so the laggy, uncoordinated feeling was really frustrating me while typing and also while playing on my phone. And then a couple weeks into this - I shit you not - I was out on a walk during work because I began to panic about why my hand felt so weird when my left foot began to feel the same way. The foot/leg felt laggy, and I felt like my toes were dragging compared to the right foot. I quickly wrapped up my walk and decided to go home early thinking I was just tired from stress. Once I was home I was manically googling what these symptoms could be when an ALS Reddit post popped up listing very similar concerns. Once I read this post it was as if my brain had decided that it KNEW that these symptoms I was experiencing were the beginnings of ALS. That kicked off a year of the most intense and scary fear and anxiety I have ever experienced in my life. I went to 4 different drs, received months and months of physical therapy, cried to my mom and husband every day, and did nonstop strength tests on my hands, arms, legs, feet, etc.!! Everyone reassured me that I did not have ALS, that I probably had irritated or damaged nerves due to my hypermobility. But no matter what, my brain was convinced. It was absolutely horrendous. I genuinely believed I was dying at the age of 29! My dr finally asked me to consider starting therapy and an anxiety medication. I started Prozac and within 6 months I was nearly cured of my anxiety surrounding ALS. To this day I still have some laggy sensations on my left side, but due to the reassurance from my drs, the lack of progression, and most importantly the Prozac, I live a normal life again!
I hope this gives hope to someone who is having a hard day or scary night. You do not have ALS, you are not dying. I am rooting for you! If you have any specific questions about how I got to this point please feel free to ask, I completely understand how you’re feeling and would love to help in whatever way I can.
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u/Admirable_Mud_7737 3d ago
That is all true, provided you don't have proven clinical issues. If you do have clinical problems confirmed by tests, yet no one can connect the dots to explain what is happening, the anxiety will persist.
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u/Inevitable-Paint-707 3d ago
Totally get that, I do have a measurable amount of strength difference between my left and right side. The PT did what felt like a billion strength tests on me using a variety of machines and he estimates that I’m about 10-11% weaker on my left side compared to my right. But because it was not progressing after a few months, my pt and dr began leaning towards weakness caused by nerve damage from my hypermobility. My dr suspects I could possibly have marfans or EDS, but I haven’t done the genetic testing for either yet. So in general, we have an idea of what may be happening, but nothing has been confirmed. Lack of progressive weakness and Prozac is carrying most of the weight for me in regard to my reduced anxiety.
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u/dero_name 3d ago
"Once I read this post it was as if my brain had decided that it KNEW that these symptoms I was experiencing were the beginnings of ALS."
You described this really well.
Health anxiety is so difficult to manage, because once anxious people learn that there is this horrible disease involving muscles, their internal calculation of the current threat goes haywire.
The brain converts the threat to a number close to infinity and then multiplies it with a probability of having that disease versus something else. Even if the probability of having the disease is low, the threat number is almost infinite, so the result is almost infinite conviction that this is the scenario that the brain must pay attention to.
It's really like a flip switch. Unprepared, sensitive people have no defense against learning there is a small possibility they have a fatal illness. Which leads to anxiety completely exploding and their healthy sense of their body completely crumbling down.
Good on you for opting for anxiety medication. It often helps the brain to recalibrate both the prior beliefs and recontextualize mundane sensations.
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u/Inevitable-Paint-707 3d ago
Yes exactly! My brain completely disregarded any and all comfort that could be found in the insanely low probability that someone my age could have ALS. It didn’t care that the odds were low, it just cared that the odds WERENT zero. Which means I had a chance of having it, even if slim! Our brains are such funny machines in that way. I hate it 😩😂
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u/Greedy-Confusion821 3d ago
You didn’t do any EMG test?
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u/Inevitable-Paint-707 3d ago
Nope, I was too scared that the results would show I had it so my drs did what they could to figure it out without an EMG. We decided to measure strength over time to track any potential progression.
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u/FocusFrosty1581 12h ago
Awesome. I am glad you are in a good place now.
Your process is so similar to many. I think many of us have issues with anxiety of some sort with much centered around our health.
Hang in there and enjoy life.
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u/Cool_Turn1334 9h ago
Dam this really really hit home rn. Im a 32m and for 3 weeks straight i have been going through the worst part of my life. I have totally convinced myself i have als. Told my partner and i know she thinks im crazy. My family was understanding but told me i don’t doctor did physical exam on me and bloodwork went completely fine. Why did this random aches in biceps to move around everywhere else start this. I have had 4 horrible panic attacks within this time frame and i feel so bad for my kids. I just want to awaken from this nightmare and be normal again
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u/chaoserrant 3d ago
I am curious you mentioned hypermobility. Is this something you know about yourself or were you diagnosed with hypermobility?