Common path? Dirty EMG, clean MRI, ALS clinic referral?

[OrangeOne]

I realize the answer is wait and see the dx, just wondering if I’m on a common path to a diagnosis that others have experienced? I have extreme left arm weakness (can’t lift), and increasing weakness in other limbs + fasciculations + fatigue. EMG by neuro found “active and chronic denervation” with abnormalities in multiple muscles in 3 limbs tested, some “severe.” Lumbar, cervical, brain MRIs came back with no obvious candidates for symptoms. Neuro says autoimmune, cancer, and MND main options left. Doing a lumbar puncture to look at autoimmune/cancer options. If nothing, then neuro said he’d refer to ALS clinic for second opinion. Have others experienced similar process?

 

[KarenNWendyn]

I agree second opinion from ALS specialist is indicated. To diagnose ALS, they need to rule out mimics in addition to finding upper and lower motor neuron abnormalities in at least 3 different spinal segments. Characteristic EMG findings count as LMN findings.

Spinal segments include bulbar (speech and swallowing), cervical (arms and hands), thoracic (chest, back, breathing) and lumbar (legs and feet).

Some neuromuscular specialists also insist on seeing evidence of progression over time before confirming an ALS diagnosis.

We always like to see two independent opinions even when a diagnosis of ALS is suspected or confirmed.

Best of luck to you.

 

[OrangeOne]

Thanks Karen. Continued testing seems the only answer until no other answer.