I’ve struggled with severe health anxiety for a while now, and just when I thought I was finally starting to get better, it all came back full force after I saw another ALS story on TikTok. Now I’m spiraling again and freaking myself out.
For the past 4 months, I’ve felt like my right arm and hand are weaker. I’m left-handed, but when I type with my right hand, I feel like I can’t keep up as well. Last week while making cupcakes, the KitchenAid mixing bowl felt really heavy, and when I was trying to zip up a kid’s sweater, gripping it felt more difficult than usual. I was still able to do everything, but it just felt harder.
I went to the doctor recently and told her all my concerns. She tested the strength in my fingers and hands by trying to pull my fingers apart while I resisted, and she said my strength was completely normal and actually very strong. She also checked my feet and toes and said there was nothing concerning. Even with that reassurance, I still feel scared something is wrong.
What makes it worse is seeing stories from people saying their symptoms started with pain or that they were told it was anxiety at first, and that terrifies me. I also get muscle twitches every single day, mostly in my legs but sometimes in my arms too, which just keeps feeding the fear.

My leg pain got a bit better after wearing shoes to work instead of crocs for a few days and now it back again full swing so..went away for a day or two

So today is my last day. From day one I noticed increased energy (I actually couldn't take a nap), after that day some flexibility in a few fingers I couldn't actually move very well, noticeable strength in my dominant arm (odd because my non-dominant arm has been carrying me since the symptoms started to get much worse), less twitching..but still not able to lift my arms so that's a concern. I continue to ask for your thoughts and prayers as I'm still trying to stay positive 🤞🏾🙏🏾. Thank you

https://www.reddit.com/r/ALSorNOT/s/e540h8lvfJ

I had a EMG done 11 months ago. It came back abnormal I guess with three different areas.
Now a senior neurologist at a major hospital diagnosed me with ALS. I wasn’t even given a new EMG to show any changes. Just diagnosis and Calvary hospital.
I still don’t believe it and feel it is wrong.
I have hyperreflexia spasticity the babinski sign.
I just want to feel like my left arm isn’t getting weaker. I rode on my bike the other day and carried a big mirror home from a store. Let’s just say my right hand vastly outperformed my left hand. I wonder if this EMG was a one off and a new one could disprove the diagnosis.

Here is the EMG results for anyone interested

R median DII and ulnar DV, normal
R radial sensory, normal
R median and ulnar motor, normal
 
R sural and superficial peroneal, normal
R peroneal EDB, normal
R tibial motor and F waves, normal
 
Needle EMG of the right lower extremity in sampled muscles innervated by the L4-S1 nerve roots showed decreased recruitment of large amplitude and long duration MUAPs in the gastrocnemius.
Brief fasciculations were seen in the gastrocnemius.
 
Needle EMG of the right and left thoracic paraspinal was normal with no abnormal spontaneous activity.
 
Needle EMG of the right upper extremity in sampled muscles innervated by the C5-C8 nerve roots showed decreased recruitment of large amplitude and long duration MUAPs in the FDI. There was also normal recruitment of large amplitude and long duration MUAPs in the EIP.
Brief fasciculations were seen in the FDI.
 
Needle EMG of the right trapezius (CN XI) showed brief fasciculations on spontaneous activity with normal recruitment of normal MUAPs on activation.
 
Needle EMG of the right tongue (CN XII) was normal. No abnormal spontaneous activity was seen.
 
Conclusion: This is an abnormal study. There is electrodiagnostic evidence of the following:
Active and chronic denervation in lumbar and cervical myotomes as well as active denervation in CN XI innervated muscles consistent with a primary axonal loss process involving motor roots versus anterior horn cells. With involvement of 3 body segments along with upper motor neuron signs on examination, these findings raise concern for amyotrophic lateral sclerosis (ALS). Per Awaji protocol, he meets criteria for clinically possible amyotrophic lateral sclerosis. referred for MND. Fasciculations, cramping, upgoing toes.Twit CT ching in the RUE (Dec 2024) and RLE (March 2025)

Female, 46, currently being evaluated, but I just want to hear if anyone has experienced something similar. This has been the hardest time of my life so far, and probably it will get worse. Here is my story, which I’m fairly sure will end with an ALS diagnosis.

In January 2026, I noticed a kind of numbness, first on the top of my ankle, and then a couple of days later the numbness spread down my arm and into my hand on the same side (left). Since then, things have only progressed and the symptoms have increased. Painful elbows, numbness that moves around a bit in my arms and legs (both sides), arms and legs that fall asleep easily, a burning sensation in the muscles and especially around my left shoulderblade. Not to mention muscle twitching everywhere, but mostly in my legs. Sometimes I get a kind of internal trembling, especially if I’ve been a bit active. It feels almost like when i haven’t eaten for many hours. Sometimes the numbness feels like it goes up into the left side of my face. I feel weakness and fatigue in my thighs and calves. My legs work, but it feels like they can’t keep going for very long and that I need to sit down. I also have muscle wasting on the inner side of both thighs (the quads?). I can see that some muscle mass has “disappeared” there. The thighs also ripple/shimmer when i tense them.
My mother was diagnosed in January 2026 after a year of evaluations (sporadic)😢

Hi Guys, I have a question about symptoms and timeline. How many years on average do you think people with ALS like symptoms need to experience before you can savely rule things out? For example. If you symptoms started in 2022 and slowly progress but you can still walk and talk in 2027. How likely is ALS on average?

hey y'all I posted here a few days ago and just had my 3rd EMG after 1 year of symptoms. Unfortunately it was not clean this time (I've had two prior and both were completely normal).

Here are my neuro's interpretation: "Mildly abnormal study of the left arm and leg. There is no electrophysiologic evidence of any generalized polyneuropathy, radiculopathy, nor any motor neuron disease. Borderline low subset of MUAPs recorded as below suggest a possible myogenic process although only the left medial gastrocnemius demonstrates myogenic action potentials. An underlying muscle disorder has not been ruled out."

Now I must admit my neuromuscular doctor was really detailed when conducting this EMG. We did the entire left side (about 4 different spots in arm including FDI, 3 different spots in leg), paraspinal (3 different spots in my spine), and tongue (directly into the side of the tongue which hurt like hell). Once in, he would swirl the needle around trying to find the right spot, then tell me to flex, and once he found it he would stay in it for awhile and try to find an issue.

My ENT was the one who messaged my neuro to test my tongue as she saw twitching when examining me but after he put the EMG in, he confirmed that they were tremors and no fasciculations were detected. I've also been twitching a lot more the past few weeks everywhere and even while during the EMG exam but i guess no fasciculations were found which im confused about.

My neuro basically said this could be a myopathic issue, but not ALS & tbh I just can't believe it. The twitching, the bulbar issues (which myopathy doesn't really affect), the weakness that's progressive, no pain in muscles, and I also continously have decreasing/low normal CK (95 -> 65 -> 53) which doesn't really happen in myopathy.

I'm not sure if I could have ALS and a separate myopathic process going on or if this could be one of those situations where EMG is abnormal but not ALS abnormal yet (like those who get diagnosed with carpal tunnel or ulnar neuropathy at first but it turns out to be ALS later on). If anyone has a reputable site where I can buy an NFL test myself, that'd be appreciated (I'm in the US).

Hi All,

Male 50.

I've resisted posting on here but I keep an eye on the sub most days.

The last few weeks have been really hard. I started my journey back in January 2024, with fairly aggressive twitching in my thighs, I had been training hard and put it down to that. The twitching subsided after a week but never disappeared, I then had a twitch in my left eye for a full month non-stop.

By April 2025 I was twitching 24/7 in calves and feet with quite a bit of activity in my thighs, like singles and doubles every few minutes, I was also getting single twitches all over my body, my back, shoulders, abdomen, arms, face, neck, glutes, these were pretty frequent.

In May I noticed my first true tongue twitch, on the side of my tongue, not relentless but I could see it and feel it.

I hit rock bottom and ended up on Sertraline, I went to A&E desperately trying to see a neurologist, had many GP appointments, everyone of them didna clinical exam and told me I didn't have MND, my family and my wife were patient and supportive but they didn't understand why I couldn't let this go and why I was questioning the professionals, my sister even stopped talking to me.

In June 2025 I had a completely clean EMG and clinical, not even a single twitch, the neurologist put my issues down to stress, he shook my hand, told me I was going to have a long life because of my fitness level and waved goodbye.

Now I had been told by every professional that I'd seen that I didn't have MND, the expectation was that I just move on and forget about it.

I desperately tried to put this behind me, the Sertraline helped my mood but the constant twitching meant I was unable to forget, I was still training and putting in some decent 5k times (for me!) and running well for long distance, still lifting well at the gym, but still deeply concerned that I was just waiting for the inevitable, I chose not to talk to my family about my ongoing concerns, I was asking too much and they put my fears down to health anxiety, they had moved on.

In February I asked the Neurologist if he was willing to see me again for another exam and EMG, I made the appointment online, he cancelled the appointment and told me it was pointless and would feed my anxiety.

I spoke with my GP and asked whether she could arrange another EMG and she also refused for the same reasons. It was and is a pretty lonely time.

I did get to see a neurologist in the end, not the same one. He gave me clinical exam and told me I don't have MND, he didn't recommend a follow up or an EMG

The last few weeks have got worse, I have started to get cramp, in my neck, hands, feet, back and shoulders and abdomen, they aren't full on cramps, they feel like micro cramps, like small bits of my muscle want to cramp, they can come in waves, especially if I am in bed, where it feels like cramp rushes from one muscle to the next.

I ran 10 miles last Sunday and whilst I was able to manage the run I did not feel good, I felt slow and struggled, my legs took almost a week to recover.

I went to the gym on Monday and still my legs are heavy and tired today, I've been missing run club because it genuinely feels like I can't keep up with the people I'd normally comfortably beat, my legs just don't feel strong. I can still do all of the normal things, walk on heels and toes, my grip strength is good, but my calf muscles are really tight and my twitching in these muscles actually hurts, my legs just feel they lack spring and strength, when I ran 5k in Tuesday I couldn't get to to my fast pace even with a really strong wind behind me.

Since I began twitching back in January 2024 I haven't ever felt weak, I've always feared it happening and now it feels like it's starting, my hands feel different as do my feet, they feel a bit more painful in the joints when I lift or run, I have been getting a strange heaviness in my toes and fingers, it's difficult to explain, it doesn't last long, it's an odd feeling, the twitching is much more present now in my upper body, especially my right arm from my shoulder to my forearm, not constant but plenty throughout the day.

I am convinced that I am going to be an outlier, one of the fraction of people that did actually start with twitching well before weakness, despite being told by everyone that I am OK. I have now paid to see a neurologist in June and I am hoping he'll refer me for an EMG, I am convinced beyond convinced that it will now show denervation, I can't otherwise understand the progression of the cramps and the relentless widespread twitching and now my legs definitely feel different.

See my post history for more details

Cliff notes calf twitching 24/7 in both calfs since January of 2025. Positive bi lateral babinski in December. MRI on brain clean , MRI on spine indicates small narrowing and disc bulges on right side.

What led me to seek help was the twitching on right quad (outer part) that is constant since last year May. Literally looks like a line going through quad.

Doctor tested both calfs right quad and all muscles in quads, hip, back, right side arm.

He found chronic nerve degeneration on just that one part of the quad that I mentioned every other part of quad was fine. He did see the twitches during the test in both calfs but no nerve damage but that one part of the quad.

His is doing the full write up but his take is that there is nothing sinister going on and believes that that quad at some point experienced some nerve damage that healed on its own.

That fact that Im getting stronger and isolated to that one muscle area almost two years later is telling.

He wants me to really have my dr look at the spine MRI.

Why do I still feel like I’m Dying FML

Had a recent spirometry that came back normal, how likely is ALS with a normal spirometry?

57 months now. Just have the anterior horn cell disease diagnosis at the moment

Hello, I’m back again I had to redo my post because I didn’t realize my bad spelling lol. Anyways can somebody please tell me if these are ALS symptoms or not or how it presents. So I wanna say in the beginning of February I started having widespread twitching that I was having tightness in my muscles like my feet, but the tight in my feet went away. But then I wanna say about a week or a month later I can’t remember I woke up in my speech has not felt the same. Like my speech just feels like my mouth is just tense off and on and that I either have a lisp in my speech that I can hear, mixing up my words like my mouth is moving faster than my brain or my voice has a straining feeling and sound in it but sometimes my voice goes back to normal. I really don’t know what is going on every time I go to the doctor I get brushed off because he says he doesn’t hear anything in my voice or because I am 16 and “black people don’t really get Als” I’m really scared that I have this terminal illness and that I’m going to die of it at a young age. even though nobody in my family has never had this. I read on teens with Als who have no family history have a genetic component like Fus or just get its. So can you please anybody tell me if you’re going through what I’m going through or do you think this is how ALS presents?

Well tomorrow is the big day where I get my EMG.

Just to share a timeline - 39 Male 185lbs

Last year January is when I noticed both calf twitching 24/7. Went to doctors in May who said it was likely nothing. Twitching started on right quad and literally as a line going through quad. Dr sent me to Neuro in November

Physical exam:
Strength was good no weakness anywhere
However, I did have Bi lateral Barbinski so he referred me for MRI on spine and Brain.

MRI -December and January
Brain - Clean

Spine:
Disc bulge(s)
Lateral recess narrowing right side
Foraminal narrowing

Now EMG tomorrow.

I’m still very active and weight-lift 5 times a week. 3 days of the week I will do stair master on level 8 for 20-30 minutes without holding on. All my exercises have increased including lower body see attached screenshots.

I do have 24/7 quad twitch and atrophy the best way to describe it is like a string wrapped around my quad that looks like an indent.

Again my day to day activity has not been impacted I’m way more in shape this year than last year and cardio has improved.

The positive Babinski and line through my quad it was scares me the most

See you on the other side guys,

27f. Started experiencing nasal regurgitation in Nov. of 2025. It has progressively gotten worse so I have an appointment scheduled already but I have started to spiral a bit. Pretty much every single day I experience some food getting “stuck” and it feels like it’s trying to go up my nose. Some foods are worse than others like rice and minced foods. I haven’t really noticed any other symptoms of ALS. At least none that I’m aware of. Could these be the beginning of Bibles onset ALS?

Is this a true statement and does anyone else have these issues and found any solutions….that aren’t diagnosed with anything at this time. Ive had burning tongue and gums for long time 2 years and the cracked tongue and fissured. The pain has been happening for awhile but now much worse. They checked vitamin and hormone levels and they are good. 😏

Pain and burning when talking are common in advanced Bulbar due to the extreme effort required to move weakened muscles and the potential for secondary nerve irritation. An atrophied tongue can develop a "cracked" or fissured appearance, and this physical change often leads to intense sensitivity to spicy, acidic, or salty.

Hi All,

I am concerned I have may ALS/MND and it just hasn't shown yet on EMG/Clinically.

Here is my story from around August/September 2025.

1. Symptom Onset & Course

• September 2025: Pain began in the right shin, initially attributed to running/exercise.
• Gradual development of:
  • Perceived right‑leg thinning
  • Reduced power in right leg (per physio - May 2026)
  • Prominent tendons around right foot/ankle
  • Widespread fasciculations (face, neck, stomach, upper legs, arms, shoulders, feet, hands, chest)
  • Subjective weakness, especially in legs - they are getting weaker
  • Pain and reduced walking tolerance
• Symptoms have slowly progressed despite normal investigations.

2. Physio Findings

• Reduced power in right leg compared to left
• Right calf and shin thinner
• Prominent tendons on right lateral foot
• No structural injury identified

3. Specialist Assessments

Neurology - February 2026

• Normal tone, power, reflexes, coordination
• No UMN or LMN signs
• No clinical evidence of MND
• Discharged with option to repeat EMG/NCS in 4–6 months if symptoms progress

Rheumatology - March 2026

• Normal power
• No synovitis
• No objective muscle wasting
• No Autoimmune disease / myoistits
• Right leg thinner but not pathological - 50cm v 48cm Thigh

MSK - December 2025

• Normal strength except mild right‑leg asymmetry
• No structural cause for symptoms

4. Investigations

Blood Tests

All normal or negative:

• ANA, ENA, dsDNA, ANCA
• CK - normal
• ESR, CRP
• Complements
• IgG
• Myositis immunoblot ➡️ No evidence of inflammatory, autoimmune, or muscle‑destructive disease.

MRI

• Shoulders: Normal musculature, no denervation or fatty atrophy - March 2026
• Brain: Non‑specific T2 hyperintensities (age‑typical) - February 2026
• Spine: C5/C6 severe compression; no cord signal change ➡️ Only structural abnormality is C5/C6, which may explain arm/hand symptoms but not body‑wide issues.

EMG/NCS (Feb & May 2026)

• No fibrillations, no positive sharp waves, no chronic reinnervation
• Mild paraspinal polyphasia - back
• Left thenar amplitude 6.25 mV vs right 11.5 mV, but no denervation
• Left thenar muscle smaller and slight hollow compared to right

5. Current Symptoms (May 2026)

• Leg weakness, especially thighs/calves; walking reduced due to weakness and pain
• Body‑wide fasciculations (face, neck, stomach, upper legs, arms, shoulders, feet, hands, chest)
• Constant twitching in:
  • Left thigh
  • Left bicep
  • Left thumb pad
• Possible atrophy, especially left thumb pad
• Leg pain (mainly right)
• Reduced walking tolerance
• Sleep and issue
• Anxiety very high

Anybody had similar experience? Thoughts?

Really spiraling and just wanted to see if anyone has atrophy and what has the doctors said about it? My leg does not feel right at all. It’s smaller than my left and I’m losing it. My ankle hurts my foot doesn’t feels right. My feels funny. I’m going crazy, sorry to bother everyone. Thank you for reading.

You guys can check my history in my profile but to make it quick, this started as low back pain and atrophy in 2019. Slowly progressed to more of my body and still in a diagnostic process. My lumbar MRI from the other day reads

"Diffuse, symmetric, near-complete fatty replacement of the

bilateral lumbar paraspinal musculature. This presentation

suggests chronic multisegmental lower motor neuron denervation,

possibly related to syringomyelia-induced myelopathy given

history, grossly similar to prior."

Like it says, my entire paraspinal muscles are nearly gone. My back hurts so bad all of the time. I've known this since 2019 when first mri showed this but ita getting worse and terminology scares me. Yes I have a long syrinx or cyst on my spine that the doc mentions can be causing it however I've had few neuros tell me it's not wide enough to cause symptoms. I'm very convinced I have a slow als. I'll be getting an updated emg on less than a month.

It seems like this is the only way we’ll get taken seriously

Hi I am a 37/f my symptoms started in September with twitching and muscle tightness. I googled my symptoms and of course ALS came up and I went down the rabbit hole. Lost so much sleep went to the ER got MRI’s that are mostly normal so no MS. My twitching and muscle tightness has pretty much disappeared.

I have gotten 3 emgs, October all 4 limbs, normal, January 4 limbs all normal, February 12 just legs all normal. Those were done by a neurologist with 40 years experience. My right leg has began to atrophy in January so now I’m really worried about that. My neuro also noticed and that’s why he ordered another emg in January and then again in February because I kept going back worried and crying.

Now my latest one done February 26 was performed by Dr. Don Yoshimura, MD, a highly experienced board-certified neurologist who practices here in California.
Who He Is
• Specialty: Neurology and Neuromuscular Medicine. He is an expert specifically in how nerves and muscles talk to each other.
• Background: He graduated from the UC San Francisco School of Medicine and completed his specialized fellowship training in neuromuscular disorders and EMG testing at UCSF as well.
Muscles Tested:m
• Right & Left Leg/Foot: VastusMed, AntTibialis, MedGastroc, Ext Dig Brev, AbdHallucis
• Right Leg Only: Peroneus Long, Soleus
• Lower Back: Right & Left Lumbar Paraspinals
Results:
• Every muscle tested showed completely Normal (Nml) activity with 0 abnormal potentials.

The atrophy and the way my leg feels just had me worried still. I can still do the heel toe walk but leg does feel weaker. All my clinical tests have been normal I have about 8. Any advice or thoughts would be appreciated. Thank you.

I have done an EMG, brain MRI, EEG, checked vitamins, electrolytes, minerals, ck, iron, cortisol, TSH, etc all normal.

Symptoms in order:
Started early last summer with shortness of breath, then followed by neck getting slightly weaker, then upper arms/shoulders, then arms/forearms, then thighs/legs, after this I started experiencing fasciculations everywhere, I also started getting more stiff in hands/neck/shoulders and more frequent hiccups. All this happened under the span of 3 months, and has now progressed fairly fast, can still walk, use hands etc but im weaker. The biggest problem I have is my breathing, its fairly difficult to breath while laying flat and I feel the need for bigger breaths.

If anyone has a clue on what this could be please write it down, im really desperate to find out the reasoning behind my symptoms.