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?