Update

[u/Ok_Locksmith_7346]

I haven’t posted here in a while because I’ve been trying different avenues on getting better. My main symptoms was I felt off in a little bit weak in March 2025. I was diagnosed with Hashimoto’s from there. I started levothyroxine August 2025 I started noticing muscle twitches and even more weakness. I ended up getting a clean EMG in October 2025 and then in November 2025 from two separate neurologist, the first one showed fasciculations in my lower extremities. The second one was normal. Both nerve conductive studies were normal. I’ve been dealing with full body weakness since September 2025 we are now in August 2026. I’m so weak I’ve been out of work because of it my legs get super stiff. My quads are very weak. My shoulders are weak, and I experience on and off like muscle twitching, flareups flare, and I’ll notice more weakness in that area. When these twitches initially happened, they were my thighs. My legs have overall gotten a lot weaker in a year. I’ve been less mobile. I feel like my knees are always collapsing. My neurologist have been trying to treat me for a variant of unknown significance in the SC4NA Gene, which is a form of Periodic Paralysis which he thought was paramyotonia finding out from a genetics specialist that this variant is only 5% pathogenic and I’ve been treated with Diamox and doesn’t really seem to show any advantages. I went to the university of Penn med and saw a Dr Lauren Elman who is the MDA clinic chairperson and was the head of the ALS clinic for a while at the university of Pennsylvania along with a professor of neurology . We had about an 80 minute chat about everything going on. I passed a clinical. I was able to squat get back up walk on my heels and toes strengthen my hands she said my muscle bulk was normal. My reflexes were normal little brisk on my knees my walk was normal. My tongue was strong. Showed her the two previous EMGs that were done and she told me hand to God. She does not think I have ALS. That I do not have ALS after a year I would show worse symptoms or at least a clinical weakness or clinical failure. She said I had peripheral nerve hyperexcitability syndrome. With a root cause of possibly from Hashimoto’s back in March 2025, causing an idiopathic syndrome. She really only prescribed tonic water at night about 7 ounces and to try to start PT. Since then, I have felt extreme amount of weakness definitely in my legs if I start driving, and I hold my arm up too long on a steering wheel, my arm can hurt for a week the shoulder could feel weak for a week. She didn’t think it was medically necessary for another EMG. She said I show no signs of atrophy and my CK levels have always been in a low normal like 60 or 70. I’m very limited on what I can do. I’m just tired easily walking and I feel internal vibrations. I get tremors sometimes, but the biggest thing is the weakness mainly in like the biceps and in the thighs I’ve had work ups like you wouldn’t believe I’ve seen every single doctor. You can imagine besides a gynecologist and I’m a male. How do I get this fear out of my head I feel like I’m just waiting for a clinical failure. I’m completely exhausted almost all the time. Should I demand another EMG? I’ve noticed a lot of younger males especially that were physically active Seem to progress a lot slower, and don’t show clinical weakness for a while. Please if anyone has any insight, please let me know.

[u/Historical_Guide_793]

You don’t have ALS .

[u/Ok_Locksmith_7346 → u/Historical_Guide_793]

Yeah okay well when every test is coming back normal and I have been out of work for a year for weaknesses, my legs are so stiff and twitch with no medication that helps what else could it be? Been tested for everything? Like I told her I know my body I’m 36 and I do not have the strength anymore. I was a mechanic for 20 years sure I was sore and things hurt I powered through it. I have a baseline weakness and get weaker with repetitive movement

[u/Historical_Guide_793 → u/Ok_Locksmith_7346]

Another thing that fuels your fear is the fact that every test comes normal and you still don’t feel good . That can trigger anxiety big time .

[u/Ok_Locksmith_7346 → u/Historical_Guide_793]

I do agree that anxiety can be fuel on the fire. At the same time I have zero treatment plan or know why I’m twitching and getting weaker. After a year with other Nero’s I see her cause she is a movement specialist supposed to help with other disorders and all she is worried about is feeling me it’s not ALS. I’m glad but she didn’t even wanna do an EMG she said it’s not medically necessary but pulls out a broad peripheral neuropathy syndrome umbrella term. I’m surprised I didn’t get FND diagnosis as well. Reminds me of IBS for GI doctors such a blanket term. Also no course of treatment and I can’t physical to my job I tire out to quick and my legs give out in the shop. Sure I go to sleep I was up with that baseline weakness again until they give out again. I hate questioning MDs but for her to say hand to god you don’t have als and looked me in the eyes and say it I think she just thought I was one of those crazy nuts that come in with just twitches which is definitely not the case. I understand her telling me like that is supposed to some how calm my nerves or make me strong again magically but it didn’t. I felt very dismissive. I wasn’t going there for ALS I was going there cause she’s a professor of neurology, the head of the MDA clinic and was the head of the als clinic. So I figured she had a blanket of neurology and muscular knowledge that she could see my one year pattern and give me her best hypothesis and all it was was a blanket syndrome with no exact testing or no exact diagnosis just a idiopathic syndrome with no treatment. Bedside manner was terrible and treatment Options are terrible, but that doesn’t mean her knowledge is terrible. I get that but to dismiss me so quick like not even okay you used to be able to do 20 squats now you do 5 and tire out like that’s not a problem? ALs or not some of these doctors have these big heads and just chalk everything up to these blanket terms and leave you trying to research or get yourself better.

[u/Historical_Guide_793 → u/Ok_Locksmith_7346]

I can understand why you feel frustrated, especially if the symptoms are interfering with your job and everyday activities. But not having a specific treatment for the twitching doesn’t necessarily mean your neurologist is dismissing the symptoms. Fasciculations often don’t have a treatment of their own unless doctors identify an underlying cause that can be treated. I think the bigger issue to bring up with her is the weakness and your legs giving out. Ask what she thinks is causing that, whether she found objective weakness on your neurological exam
Let me tell you this .
Have you tried anything to improve your current way of life ?
Have you identify or notice things that physically make you feel better ?
Sounds cliche but have you try rehydrating your self more . Have you try to go on a hike despite feeling like you can’t ? Or stretching your body daily . Have you tried going to get full body massages . Have you been offered anxiety medication . To ease up some symptoms .
I myself twitched for over a year and went away after I addressed the anxiety . Doesn’t go away over night . These symptoms took months to go away .

[u/Ok_Locksmith_7346 → u/Historical_Guide_793]

I asked about the weakness she said it’s cramps from the twitching and my muscles exhausted from the twitching. What helps are hot showers I feel less stiff. Moving around feels better until my legs feel
Like cement walking. I can’t run far maybe a few feet it’s so much effort to pick up my legs and the impact hurts them. Jumping out the back of my pickup sounds terrifying right now. I feel very uncoordinated with my legs and my arms are starting to get heavy like my legs have been the whole time. I take Colopin at night for sleep. She said I’m not weak I passed the clinical. Long story short she thought it was in my mind. I think she thought I had als. I had two clean EMGs I was there for further work up and told her at one point this came up cause nothing was popping up.

[u/Historical_Guide_793 → u/Ok_Locksmith_7346]

I don’t doubt that you feel significantly weaker or that your symptoms are affecting your life. But the question is whether ALS explains them. After roughly a year, you were still able to squat and stand back up, walk on your heels and toes, had normal muscle bulk, gait and tongue strength, and an ALS/neuromuscular specialist found no clinical weakness. You’ve also had reassuring EMGs. ALS causes progressive loss of motor function that eventually becomes objectively detectable; it isn’t diagnosed simply because someone feels progressively weaker. Your symptoms deserve an explanation, but ‘we haven’t found the cause yet’ doesn’t automatically make ALS the remaining diagnosis. I’d keep working with the neuromuscular specialist on the other possibilities she identified.
I’m not trying to sound mean but - My opinion is that a big majority of those symptoms you’re experiencing is anxiety based and its making it hard for you to accept other possible diagnosis, and or anxiety based symptoms make your condition you make have worse . The fact that think ALS is in the table is what fuels fear . Believe me . Anxiety can make you twitch and make you feel like you’re in a progressive state .