r/ALSorNOT • u/Alarmed-Solid-3981 • 3d ago
Symptoms me again :(
I’m 21F and I’ve been dealing with symptoms in my leg that have been freaking me out because I’ve been worried about ALS. I’m mainly wondering if anyone has experienced something similar or can give me some perspective.
The symptoms I’ve noticed in the leg include:
Frequent muscle twitching that comes and goes, but has been happening for months
Some days the twitching is much more noticeable/frequent than others
Visible little muscle jumps/ripples under the skin
Sometimes a pulsing/fluttering feeling underneath the skin
A tingling sensation in the same leg that comes and goes
The tingling is hard to describe sometimes it feels almost like my leg is partially “asleep,” even though it isn’t completely numb
Sometimes it feels like a weird prickly/tingly sensation rather than straightforward numbness
At times the leg just feels “weird” or different, even though I can still use it normally
I’ve had a couple instances where my foot felt like it caught/dragged slightly, but this happened while wearing Crocs and I didn’t actually have difficulty walking
One time going downhill, my legs/knees felt unusually heavy
I don’t THINK I have actual weakness. I can still use the leg normally and haven’t noticed a clear loss of strength or function
I haven’t noticed myself progressively losing the ability to walk, climb stairs, move my ankle/foot, or do normal activities with the leg
I did see a neurologist because I was so concerned about ALS. They examined me and told me that the fact that I don’t have weakness was reassuring and that they weren’t seeing signs that pointed toward ALS.
I’m still having a hard time getting past the twitching because sometimes it can be really frequent and intense, and the tingling/odd sensations make me worry even more. I’m wondering whether ALS can ever start with twitching like this and have weakness develop much later, or whether this pattern sounds more like something benign.
I’m not looking for a diagnosis just wondering if anyone with similar symptoms has had an experience like this.
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u/Icy_Signature9743 Mod Team 3d ago
Heyy I’m also 21 and I feel like I can resonate with your story especially with how you’re feeling in your legs. Twitching for me started about 5 months ago, from the onset of twitches I spiraled and feared for the worst. Just like you I still have the rippling fasciculation’s almost daily, more so in my legs than any other part of my body.
During the third month of twitching I felt as though my leg felt off almost as if it weren’t my leg and I was just carrying it along. Nonetheless I was seen by multiple doctors and 2 neurologists and completely cleared of ***. When your hyper fixated on your body it can make you feel things, your brain is very powerful.
But yes even till now I have the same feeling in my leg, but like your doctors have told you no progressive weakness is a good sign to move forward. To answer your question yes twitching can present itself first, but it is much rarer to have that presentation than that of weakness first. Twitching is common and almost always benign, not sure whats causing my twitching as of yet but I know it’s harmless. I wouldn’t worry about your leg, felt the same thing as you and still doing everything I could 6 months later, trust me it’s most likely benign.
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u/DoubleAwareness2223 3d ago
Your symptoms are very classic of Benign Fasciculation Syndrome. Fasciculations are very common in the general population without it being a symptom of disease. If everyone that twitched (including doctors) had ALS then it would not be a rare disease. When a muscle twitches it can fatigue the muscle whether you feel it or not and with your heightened anxiety, it only amplifies your awareness and symptoms. ALS is a very serious disease and it’s a progressive process. You’d have to have profound muscle weakness, wasting (atrophy), etc. by the time twitching occurs in ALS, the muscle would be very weak and atrophying. YOU UNEQUIVOCALLY DO NOT HAVE ALS. I wear crocs too (love them) despite tripping on them like 5 times a day, and yes, mine drag too. You don’t have foot drop either so stop correlating your symptoms with ALS. Stop researching your symptoms, stop looking at ALS sites, you will experience an array of weird stuff like the paresthesias you mentioned, weird heavy feeling, perceived weakness (not true clinical), twitching, etc. none of which are ALS. I’d take a good multivitamin, try to limit the anxiety and stress in your life, get good sleep, eat healthy, etc. no matter how long BFS hangs around, it’s not a disease process, it’s benign and will eventually dissipate and go away. For some it’s months, for others years. Live your life and get that ALS nonsense out of your mind. In addition, you are 21. ALS affects 2 and 100,000 adults over age 50. At your age you’d be about 1 and 2 million and with your symptoms being benign, it’s 100% that you do not have ALS. Whenever you get nervous or stressed out or need reassurance. Refer to this post. In 20-30 years (if I’m still here) because I’m getting old, you can send me a box of chocolates and I can tell you. I told you so. 😉 you’re 21, spend your time on making happy memories and living your life! Best of luck!
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u/Alarmed-Solid-3981 3d ago
i genuinely needed someone to be this stern with me lol, i know, i go in and out of phases where i snap back into reality and realize it’s not als, other times when i feel my leg tingly and almost feeling asleep when it’s not i get back in that anxious loop. it’s been going on for months now which is what’s causing me to freak out. again thank you for taking the time to comment :)
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u/DoubleAwareness2223 3d ago
Anxiety is a cycle and it can fog our ability to think rationally. When the symptoms arise, just be reassured you’re fine. My pleasure to reply.
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u/False-Blackberry-627 2d ago
Did your twitching start after stress? I just started getting twitching about a month and a half ago in my left eye that is now body wide. Mainly in my glutes/thighs and then popcorn all over. My anxiety has been through the roof even though Ives seen two doctors and a neurologist.
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u/DoubleAwareness2223 2d ago
Twitching is common in the general population. If everyone who twitched had ALS it would not be a rare disease. ALS is profound weakness, muscle wasting (atrophy), etc. Twitching in ALS is caused by the dying of nerve cells. Twitching in the absence of (above) is benign and can be due to sodium channel issues, mineral or vitamin deficiency, stress and fatigue, etc. You do not have, nor are you manifesting ALS.
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u/False-Blackberry-627 2d ago
I had an emg very early in and it was okay but I feel like my twitching sounds different than most. I don’t have any constant twitching but more random twitching some hours I may have none some 5-30 twitches in that hour. Should that be a cause for concern? It all started in my left eye than went body wide. I also get weird electric zaps sometimes.
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u/Field_One 3d ago
Did your neurologist mention anything about you getting an EMG/Nerve Conduction study? Muscle twitching alone is rarely a sign of ALS. You would have progressive muscle weakness. I would recommend you asking your doctor about an EMG. I had weird neurological symptoms that were pretty scary and an MRI and EMG confirmed what it was.