100% Convinced I Have ALS, Please Help

[Ethan9826]

Hi Everyone,

I want to start off by stating that I have extreme health anxiety disorder. I have had it for about 10 years (I am male 26), and have gotten treatment for it on an off over the years. The last 2 months or so, it has been the worst it has ever been, so I'm stating this upfront for clarity and honesty. I do however feel I have real symptoms of ALS that scare me to death, and so I need help from people who know about it. I am a physical therapy student so I do know a decent amount about anatomy and physiology.

About 4-6 weeks ago (ish, timeline is fuzzy due to the anxiety) I noticed fairly significant atrophy of my left thenar eminence (pics of both hands and calves included). There is some pain/discomfort in those muscles, especially when I stretch them or put weight through them like lean on my hands. I was convinced of left forearm atrophy, but after self measurements, my dad measuring for me, and one measurement done by a doc, they were similar. I have also had trouble the last few weeks tying my shoes, typing, picking up my keys, squeezing items without shaking, and even taping my fingers in sequence. I am right arm dominant so I know the non-dominant arm will be slightly smaller and less coordinated, but this seems very excessive. I also notice weakness in my left tibialis anterior, and while I can heel walk (no clinical foot drop), it likes to shake a lot while contracting the muscle eccentrically, the tibialis anterior weakness has felt present for maybe 2-3 months or so. I have weakness/tightness in my left calf as well, but I have had tight calves most of my life. I also have a disc herniation at L5/S1 (S1 nerve root), which could cause calf issues, but the MRI I had in February of 2023 showed it was touching the nerve root, but not pinching it. Recently, I also feel my right hand is slightly less dexterous than normal as well, but this may be a product of the severe anxiety (I just started Zoloft up again a little over a week ago, and most likely will be taking time off school for IOP therapy as this health anxiety is destroying my life currently). In January I weighed 206lbs, and started trying to lose weight, however somewhere along the way anxiety took over and stopped me from eating, and I currently weigh 171lbs, so that's a factor, in addition to hardly ever sleeping due to panic attacks and anxiety. I also feel that I am having to clear my throat more, more forcefully swallow, constant anterior neck tightness, having to think more before I say words to avoid misspeaking, etc. I also have twitches or fasciculations everywhere, but mainly in my feet, calves, quads and hamstrings, but this could easily be due to the anxiety, malnutrition, and lack of sleep. But, I know this can be heavily due to anxiety. The anxiety was so bad I checked myself into an inpatient facility for 5 days last week because I couldn't handle the world and although not suicidal I was having dreams about it that scared me.

In terms of testing, I thought originally I was having carpal tunnel symptoms last year, so I had an EMG/NCS test in January of 2024 for my left and right arms, which came back clean, but I was not worried about ALS or suspected symptoms then, or noticed any atrophy, just that my left hand felt a tad weak (but the EMG was clean). Originally this time around I was suspecting neurogenic thoracic outlet syndrome, so I had an EMG/NCS test of just the left arm about a week ago (April 2025), and once again the results were clear. I have heard mixed reviews on the EMG/NCS. I have heard some people say if it is negative you don't have ALS period, and others say they had several negative EMG/NCS before diagnosis. My neuro professor in my doctorates program is convinced I do not have ALS (she thinks the two EMGs rule it out), but nothing else explains the left hand atrophy, left calf atrophy, and weakness in both. I also feel like I have left foot pain, like the muscles are atrophied and I have less cushion, and I cannot flex my left big toe nearly as far as my right. My PCP also does not think I have it, but I also know that is not their area of expertise.

I understand that ALS is a fairly rare disorder (2/100,000 people or so, 1/350 lifetime risk for men, etc.), especially at the age of 26, but the symptoms seem to real to ignore. I am terrified that my active lifestyle and dream job of being a PT are going to come crashing down and I don't know how to cope right now. I see a neuromuscular neurologist on June 25, 2025 (2 months out from today), and hopefully will get a brain/spine MRI. My parents don't believe me, my professors don't believe me, but I just have this feeling that I know I have it. I’m hoping my anxiety is causing all this, but it’s hard to believe anxiety would cause left sided atrophy. Any advice or input would be helpful. I am sorry to anyone diagnosed with this awful condition, and I am sorry to anyone dealing with the fear of not knowing if they, or a loved one has ALS.

Here is a little summary of things that (to me) help rule in or out ALS (please correct me if I am wrong):

Help rule in ALS:
- Left hand atrophy (split hand sign)
- Left hand coordination/weakness issues
- Left tibialis anterior weakness
- Left calf atrophy/weakness
- Left foot atrophy
- Twitches/fasciculations
- Neck tightness, swallowing concerns, fumbling over words
- Highly active in youth (increases risk)
- Male and white (slightly more at risk for both demographics)

Help rule out ALS:
- Health anxiety (have diagnosed myself 200 times and been wrong every time)
- Clean EMG of left and right arm in January of 2024, and clean EMG of left arm in April 2025 (15 months apart)
- No familial history (even though most cases are sporadic)
- No clonus, Hoffmann, all reflexes normal as of April 2025
- 5/5 MMT for bilateral upper extremity according to PM&R doc as of April 2025
- Pain/“burning” feeling in thenar muscles on both hands (pain points away from ALS if I understand, but they also ruled out carpal tunnel, anxiety?)
- L5/S1 disc herniation (as of February 2023 it wasn’t pinching the nerve root)

 

[lgelb]

I have seen nothing in your account that points to clinical weakness, not just perceived, but a ton of reasons for what you perceive as abnormal or concerning, and of course the reasons you list that ALS is really not in your picture. The anecdotes you think you have read about early EMGs relate to people that have had abnormal clinical exams not explained by their past histories. You list many issues that anxiety and poor sleep are known to stoke.

I strongly advise you to block this and all other ALS sites for your mental health, get better counseling, switch up your meds if warranted in consultation with a second opinion therapist, and stop stoking your own fears by asking people to validate them.

Another inpatient stay maybe in a different facility and robust day treatment after could certainly be of benefit. Whenever you are able to focus on your program, that would obviously benefit you and your future patients more than the time you are spending worrying pointlessly on ALS, which you have over-researched from a third-party perspective and under-researched from the perspective of your own risk.

All the best.

 

[Ethan9826]

Thank you for the fast and detailed reply. I definitely am no ALS expert and the anxiety is definitely a huge culprit. But I still am a little worried as the strength assessment wasn’t super detailed. Like I still do feel like when I try to get off the floor and use my left hand/arm, it shakes and buckles when the right does not. It has never done that before and I don’t get why anxiety would affect my left hand, arm, and leg, but not my right side. I also still do see atrophy in the left hand muscles, specifically FDI and APB. When I type I still notice my hand doesn’t coordinate as easily as it use to.

I worry this is too specific to be anxiety. General symptoms like neck/swallowing issues and twitches I totally get can be anxiety. I do trust your judgement however as you know way more about it than me. I just wish I could be certain it wasn’t ALS, but my brain is struggling to accept anxiety (or another condition to explain symptoms). Sorry to be wishy washy, and I know this is not an anxiety forum, and I do not mean to be disrespectful to the people on here dealing with ALS. I do plan to keep getting help for my mental health, and try to stop googling symptoms and stuff. So far 2 weeks on Zoloft has helped quite a bit, but I’m still scared of ALS as of now. But once again, thank you for taking time to respond to my concerns, it means a lot.

 

[lgelb]

I did not say that anxiety was causing all your issues. The use of the word "stoke" was deliberate. Also note my mention of poor sleep, which people with anxiety tend to have, but can get too used to.

But very commonly, you have a mild issue, like balancing yourself/sleeping heavily on one side, overusing that arm, aggravating a past injury, etc. that anxiety allows you to focus on, thereby strengthening your perceptions of severity. That can be true whether your spine issues are contributing (which can be true regardless of a 2y-old MRI) or not.

Imagine that you were supporting family members financially and had to go to work today for an important task -- no excuses but death or you'd be fired. Would you be able to? Would anyone be able to perceive your concerns, unless you mentioned them?

Hopefully you see my point. And since you are studying for PT, hopefully you also see that if your mental health permits, a PT eval (outside your program, preferably) could be of value, to baseline your strength and flexibility, and to test the hypothesis that there is a treatable condition here.