u/love_conmas197

I’m looking for honest opinions because I’m still struggling with the fear of ALS, even though every neurologist I’ve seen has reassured me.

My symptoms started around September 2025 with widespread muscle twitching and muscle tightness. The twitching has actually improved a lot over time and isn’t really my concern anymore.

What worries me now is my right calf. Around January 2026 I noticed it looked smaller than my left. It feels softer and different to me, and it gets tired or burns more quickly during calf raises. I don’t know if it’s true weakness or if I’m hyperfocused on it.

Here’s everything I’ve had done:
4 EMGs/NCS over several months (including testing of both legs, all four limbs, and multiple muscles in my right calf) — all completely normal. By two different neurologists.
Brain MRI — normal.
Cervical spine MRI — normal.
Lumbar spine MRI — only a mild L5-S1 disc bulge, nothing significant.
Multiple neurological examinations with normal strength and normal reflexes.
Also my twitching has pretty much stopped.

CK: 56 (normal).
Neurofilament light chain (NfL): normal.

ANA: negative.
Other blood work has been unrevealing.
I’ve seen multiple neurologists, and every one of them has told me they do not think I have ALS. One neurologist even felt another EMG wasn’t necessary because my previous studies were normal.

Despite all of that, I can’t stop worrying because my right calf still feels different and looks smaller to me.
Also my leg is in pain it feels so different and weird.

If you were in my situation—with these symptoms, this amount of testing, and multiple neurologists saying it isn’t ALS—would you still be worried about ALS? Has anyone else had one calf seem smaller or feel different but end up with a non-ALS explanation?

I’m looking for honest experiences and thoughts, not just reassurance.

I’m looking for honest opinions because I’m still struggling with the fear of ALS, even though every neurologist I’ve seen has reassured me.

My symptoms started around September 2025 with widespread muscle twitching and muscle tightness. The twitching has actually improved a lot over time and isn’t really my concern anymore.

What worries me now is my right calf. Around January 2026 I noticed it looked smaller than my left. It feels softer and different to me, and it gets tired or burns more quickly during calf raises. I don’t know if it’s true weakness or if I’m hyperfocused on it.

Here’s everything I’ve had done:
4 EMGs/NCS over several months (including testing of both legs, all four limbs, and multiple muscles in my right calf) — all completely normal. By two different neurologists.
Brain MRI — normal.
Cervical spine MRI — normal.
Lumbar spine MRI — only a mild L5-S1 disc bulge, nothing significant.
Multiple neurological examinations with normal strength and normal reflexes.
Also my twitching has pretty much stopped.

CK: 56 (normal).
Neurofilament light chain (NfL): normal.

ANA: negative.
Other blood work has been unrevealing.
I’ve seen multiple neurologists, and every one of them has told me they do not think I have ALS. One neurologist even felt another EMG wasn’t necessary because my previous studies were normal.

Despite all of that, I can’t stop worrying because my right calf still feels different and looks smaller to me.
Also my leg is in pain it feels so different and weird.

If you were in my situation—with these symptoms, this amount of testing, and multiple neurologists saying it isn’t ALS—would you still be worried about ALS? Has anyone else had one calf seem smaller or feel different but end up with a non-ALS explanation?

I’m looking for honest experiences and thoughts, not just reassurance.

I’m looking for honest opinions because I’m still struggling with the fear of ALS, even though every neurologist I’ve seen has reassured me.

My symptoms started around September 2025 with widespread muscle twitching and muscle tightness. The twitching has actually improved a lot over time and isn’t really my concern anymore.

What worries me now is my right calf. Around January 2026 I noticed it looked smaller than my left. It feels softer and different to me, and it gets tired or burns more quickly during calf raises. I don’t know if it’s true weakness or if I’m hyperfocused on it.

Here’s everything I’ve had done:
4 EMGs/NCS over several months (including testing of both legs, all four limbs, and multiple muscles in my right calf) — all completely normal. By two different neurologists.
Brain MRI — normal.
Cervical spine MRI — normal.
Lumbar spine MRI — only a mild L5-S1 disc bulge, nothing significant.
Multiple neurological examinations with normal strength and normal reflexes.
Also my twitching has pretty much stopped.

CK: 56 (normal).
Neurofilament light chain (NfL): normal.

ANA: negative.
Other blood work has been unrevealing.
I’ve seen multiple neurologists, and every one of them has told me they do not think I have ALS. One neurologist even felt another EMG wasn’t necessary because my previous studies were normal.

Despite all of that, I can’t stop worrying because my right calf still feels different and looks smaller to me.
Also my leg is in pain it feels so different and weird.

If you were in my situation—with these symptoms, this amount of testing, and multiple neurologists saying it isn’t ALS—would you still be worried about ALS? Has anyone else had one calf seem smaller or feel different but end up with a non-ALS explanation?

I’m looking for honest experiences and thoughts, not just reassurance.

Has anyone gotten an NFL test? I just got my results and I’m almost on the red so I’m freaking out. But it does say normal. Any opinions or thoughts would be greatly appreciated.

I have had 4 normal emgs, normal NFL and pass all clinical exams. Coming up on month 10. Twitching has gotten much less. Just concerned about my right leg feeling weird and smaller. Thank you for any help.

https://www.reddit.com/r/ALSorNOT/s/0pwhFjSXZb

Has anyone gotten an NFL test? I just got my results and I’m almost on the red so I’m freaking out. But it does say normal. Any opinions or thoughts would be greatly appreciated.

https://www.reddit.com/r/ALSorNOT/s/qIMkdBATgm
I have had 4 normal emgs, normal NFL and pass all clinical exams. Coming up on month 10. Twitching has gotten much less. Just concerned about my right leg feeling weird and smaller. Thank you for any help.

Your result:
NfL: 1.24 pg/mL
Quest reference range: <1.29 pg/mL
Interpretation: Normal

I’m worried this seems high.
I have had 4 normal emgs and 10+ clinical exams. Now this barely normal result.

Do you think I can say no als? 🥺

I’m looking for some perspective because I’ve been terrified of ALS for months and can’t seem to move past it.

Timeline
September 2025
Symptoms began with muscle tightness, twitching, and strange sensations in my legs.
Started noticing widespread fasciculations in my calves, thighs, face, and arms.
Developed significant anxiety about ALS.

September 25, 2025
Brain MRI was normal.

October 3, 2025
First EMG/NCS performed on all 4 limbs.
Results were completely normal.

Late 2025
Continued experiencing twitching, tightness, and feelings of weakness.
Cervical spine MRI was normal.
Lumbar MRI showed only a mild L5-S1 disc bulge without significant nerve compression.

January 2026
Noticed my right calf appeared smaller than my left.
Neurologist measured approximately a 1.5 cm difference.
Despite this, strength and reflexes remained normal on examination.

January 30, 2026
Second EMG/NCS performed on lower extremities and forearms.
Results were normal.

February 2, 2026
CK blood test was normal at 32.

February 12, 2026
Third EMG performed on both legs.
Results were normal.

February 26, 2026
Fourth EMG/NCS performed by an experienced physician with over 40 years of experience.
Multiple muscles in my right calf were tested.
Bilateral nerve conduction studies were normal.
EMG of lower extremity muscles and paraspinal muscles was normal.
No evidence of ALS, neuropathy, or radiculopathy.

March–June 2026
Continued to feel that my right calf is smaller, softer, weaker, and different from the left.
Right calf burns more quickly during calf raises.
Sometimes it feels harder to rise onto my toes on that side.
Persistent feeling that something is wrong despite normal testing.
Multiple neurological examinations have shown normal strength and reflexes.
Most recent neurology visit again found normal strength and reflexes, and the neurologist did not feel another EMG was necessary.

My Current Concern
Even after 4 normal EMGs, normal neurological exams, normal reflexes, normal strength testing, normal CK, and nearly 9 months since symptoms began, I’m still worried that ALS is somehow being missed because my right calf feels different and appears smaller.
Has anyone experienced persistent calf asymmetry, strange sensations, perceived weakness, or muscle twitching with normal neurological testing and multiple clean EMGs? I’m struggling to trust the results even though every specialist I’ve seen has told me they do not see evidence of ALS.
Any thoughts or experiences would be appreciated.

I’m looking for some perspective because I’ve been terrified of ALS for months and can’t seem to move past it.

Timeline
September 2025
Symptoms began with muscle tightness, twitching, and strange sensations in my legs.
Started noticing widespread fasciculations in my calves, thighs, face, and arms.
Developed significant anxiety about ALS.

September 25, 2025
Brain MRI was normal.

October 3, 2025
First EMG/NCS performed on all 4 limbs.
Results were completely normal.

Late 2025
Continued experiencing twitching, tightness, and feelings of weakness.
Cervical spine MRI was normal.
Lumbar MRI showed only a mild L5-S1 disc bulge without significant nerve compression.

January 2026
Noticed my right calf appeared smaller than my left.
Neurologist measured approximately a 1.5 cm difference.
Despite this, strength and reflexes remained normal on examination.

January 30, 2026
Second EMG/NCS performed on lower extremities and forearms.
Results were normal.

February 2, 2026
CK blood test was normal at 32.

February 12, 2026
Third EMG performed on both legs.
Results were normal.

February 26, 2026
Fourth EMG/NCS performed by an experienced physician with over 40 years of experience.
Multiple muscles in my right calf were tested.
Bilateral nerve conduction studies were normal.
EMG of lower extremity muscles and paraspinal muscles was normal.
No evidence of ALS, neuropathy, or radiculopathy.
March–June 2026
Continued to feel that my right calf is smaller, softer, weaker, and different from the left.
Right calf burns more quickly during calf raises.
Sometimes it feels harder to rise onto my toes on that side.
Persistent feeling that something is wrong despite normal testing.
Multiple neurological examinations have shown normal strength and reflexes.
Most recent neurology visit again found normal strength and reflexes, and the neurologist did not feel another EMG was necessary.

My Current Concern
Even after 4 normal EMGs, normal neurological exams, normal reflexes, normal strength testing, normal CK, and nearly 9 months since symptoms began, I’m still worried that ALS is somehow being missed because my right calf feels different and appears smaller.
Has anyone experienced persistent calf asymmetry, strange sensations, perceived weakness, or muscle twitching with normal neurological testing and multiple clean EMGs? I’m struggling to trust the results even though every specialist I’ve seen has told me they do not see evidence of ALS.
Any thoughts or experiences would be appreciated.

I’m looking for some perspective because I’ve been terrified of ALS for months and can’t seem to move past it.

---

Timeline
September 2025
Symptoms began with muscle tightness, twitching, and strange sensations in my legs.
Started noticing widespread fasciculations in my calves, thighs, face, and arms.
Developed significant anxiety about ALS.

September 25, 2025
Brain MRI was normal.

October 3, 2025
First EMG/NCS performed on all 4 limbs.
Results were completely normal.

Late 2025
Continued experiencing twitching, tightness, and feelings of weakness.
Cervical spine MRI was normal.
Lumbar MRI showed only a mild L5-S1 disc bulge without significant nerve compression.

January 2026
Noticed my right calf appeared smaller than my left.
Neurologist measured approximately a 1.5 cm difference.
Despite this, strength and reflexes remained normal on examination.

January 30, 2026
Second EMG/NCS performed on lower extremities and forearms.
Results were normal.

February 2, 2026
CK blood test was normal at 32.

February 12, 2026
Third EMG performed on both legs.
Results were normal.

February 26, 2026
Fourth EMG/NCS performed by an experienced physician with over 40 years of experience.
Multiple muscles in my right calf were tested.
Bilateral nerve conduction studies were normal.
EMG of lower extremity muscles and paraspinal muscles was normal.
No evidence of ALS, neuropathy, or radiculopathy.

March–June 2026
Continued to feel that my right calf is smaller, softer, weaker, and different from the left.
Right calf burns more quickly during calf raises.
Sometimes it feels harder to rise onto my toes on that side.
Persistent feeling that something is wrong despite normal testing.
Multiple neurological examinations have shown normal strength and reflexes.
Most recent neurology visit again found normal strength and reflexes, and the neurologist did not feel another EMG was necessary.

My Current Concern
Even after 4 normal EMGs, normal neurological exams, normal reflexes, normal strength testing, normal CK, and nearly 9 months since symptoms began, I’m still worried that ALS is somehow being missed because my right calf feels different and appears smaller.
Has anyone experienced persistent calf asymmetry, strange sensations, perceived weakness, or muscle twitching with normal neurological testing and multiple clean EMGs? I’m struggling to trust the results even though every specialist I’ve seen has told me they do not see evidence of ALS.
Any thoughts or experiences would be appreciated.

Today I had an appointment with the Neurologist Nurse. She did all the strength tests, I asked would you give me a 5/5 she said she would give me a 100/5 if she could. Reflex’s all normal, strength normal she also had me do some calf raises and she tried to push me down, she couldn’t. I showed her my calves and she said she sees the difference but it’s not significant.
I have been scared about having als since September 2025. My twitches have almost completely faded. My leg bothers me it doesn’t feel right and it is slightly smaller even though it’s my dominant leg. I haven’t been working out and I have really been worried about als.
I’m so sorry for everyone affected by this horrible disease.
I have talked to many people with als, read a lot of stories and saw the YouTube videos. It truly breaks my heart and scares me. I’m so sorry. I’ll never forget about them.
I tried to go to therapy to get help but she just wanted to talk about childhood stuff, not my fear. I want to feel better. I don’t want to keep being scared. I paid $5 for the askdocs online too, has anyone else done that? That’s sad.
I have gotten 4 emgs since September. All normal. Two different neurologists too, probably 10 clinical exams, all normal.
Theres a lot of people here with the same fear I have and some that have helped me. I don’t have anyone to talk to about this. Everyone’s sick of me, all the tests are normal so you’re fine! My leg doesn’t feel fine or right and it has gotten smaller. I just want to vent really, thank you for reading. Any thoughts, opinions are appreciated. Thank you.

Hello just wanted to see what everyone’s thoughts are on this. My leg is getting smaller and doesn’t feel right. I can still heel toe walk. I can do calf raises but it’s harder to do on my right side, my dominant side. Walking normally but again my leg feels differently. Twitches are much less if any really. Any help or thoughts, opinions, anything really as I am going crazy. I have had 4 emgs since October 2025 and about 9 clinical tests, all completely normal. MRI’s mostly normal too. Blood tests normal.
Thank you.

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.

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:
• 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.

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.