Thank you all for reading this post. I have been getting dismissed and the run around by doctors all over, I am not sure what to do, think, or where to go from here. I have no history in my family of MND or neuromuscular disease. I’m here to see what others may think or if they see any familiarity. I will write my story shortened below.

Fasciculations started March of 2020, are chronic, consistent, and felt everywhere. My legs twitch constantly. First EMG in May of 2020, normal, 2nd January 2021, normal. I had strong fears of als, still do. I tried to let it go, move forward, and trust that normal testing and clinical exams were reassuring. I also had exercise intolerance, fatigue, feeling of pre cramps in hands and legs. I continued to exercise as normal, didn’t really notice any strength decline.

Fast forward to October of 2025, I started feeling more fasciculations in upper body, big huge thumpers in biceps, back, stomach etc. I felt out of breath when laying down and would wake up with headaches. I also noticed that my right leg was globally smaller than my left leg. Thigh, calf, hamstring, glute, were all globally smaller than my left leg, I noticed my leg was weaker than the other and could feel it push less than my left leg. I also had a very tight right hip, pain, and restricted movement in the hip. So I sought out help, went to another neurologist, who performed a clinical exam, noted no weakness, absent reflexes in knees and ankles, normal upper body reflexes. She noted the muscle atrophy, said she thought it was mechanical and not neurological. Her neuro performed EMG and said it was normal. Did both legs and lower paraspinal muscles.

I did not feel confident in their assessment as I felt rushed. So I went to a university teaching hospital. They noted similar findings on clinical exam of “no UMN or LMN signs on exam”. They noticed the muscle asymmetry but said the muscle bulk was normal. About month ago I hurt my lower back when squatting down and felt a pop in my lower back which is still painful and dealing with intermittent numbness in my left foot, pain in that leg, and fatigue in general.

I can still walk on my toes and heels, I was able to do a plank yesterday for 2 minutes with horribly shaking. I have noticed that my right leg is weaker and it definitely wants to push less. I’m able to get up from a seated position using only one leg however, so my stength is still there.

The new neuromuscular clinic I went to is a teaching hospital. I saw their resident, attending, and als doc. They performed EMG and ncs and I will post the conclusion as follows. Now on the recent exam they noted I presented with peripheral neuropathy on exam with absent reflexes in knees and ankles. No weakness on exam, no UMN or LMN signs. I do have a weakness feeling in right leg and right arm. I also have painful hands and fingers. I had this cramping feel and pinky tremor in pain, that i first noticed when holding my phone up with my right hand. I have pain when flexing my fingers, it is symmetrical on both hands, I have a paratheisa feeling in hands, I have a tightness feeling in my middle, index, and thumb. I’ve also noticed my balance is off a little bit, sometimes I get tingling in my feet. Over the last few months I am dealing with increased pain in my hands and fingers. I feel weird sensations in my thumbs when moving them, when I pick things up I feel a numbness in the fingers, especially thumbs and index. They ran bloodwork and everything was normal except ANA, rheumatoid factor, and my NFL levels. ANA and rheumatoid factor was mildly elevated. NFL was elevated at 4.08pg/ml on lab corp assay with z score of 13. On the simoa scale it was somewhere between 27-29pg/ml.

The teaching hospital thought I had BFS, especially with no weakness on exam. That is what the attending physician said, and the resident. I’ll post the als doctors EMG interpretation “HISTORY:
30yo WM reports a 6 year hio muscle fisciculations in both legs from the knees down. He has no weakness. A focused neuromuscular exam reveals areflexia in both knees and ankles lower extremities with normal DTRs in the upper extremities. Strength is noemal throughout, vibratory sensation is diminished at the loes bilserally.
Electrodiagnostic studies were designed so evaluate for neuropathy.
NEURODIAGNOSTIC IMPRESSION/FINDINGS:
Lower extremities could not be warned prior to testing and may affect latencies & velocitics. Motor nerve responses were normal in amplitude and without significant asymmetry. The left tibial distal motor latency was mildly prolonged before correction for temperature. All F-wave latencies were increased before correction for lemperature and leg-length. Peroneal sensory responses were unrecondable. The left sural SNAP was low in amplitude while the right sural sensory response was normal. A limited needle exam of the right leg revealed mildly call motor units but was otherwise nomal.
ABNORMAL STUDY
There is electrodiagnostic evidence of a mild axonal sensorimotor polyneuropathy:”

I’m not sure if this is early or slow ALs, but it’s got me worried. The ALs dr couldn’t tell me if I had it or not because it seemed that my motor units were involved. Not sure what to think. That said my testing in clinical exam strongly points toward benign fasciculation syndrome with a mild polyneuropathy.