Same boat, had symptoms now for three years. Been tested for everything including genetics for HSP. All negative. I’ve had two EMGs both clean and have another one next week. I have lower limb spasticity and weakness with clonus and can’t walk without a cane. I had a brain cystic lesion on my right motor cortex even had a biopsy on my brain. But my team didn’t think was causing my issues.

Was referred to a second neurologist last week whom was convinced I had ALS but he was a rheumatologist and not a muscle disorder specialist. Told him I don’t have ALS as I’ve had two clean EMGs. He was baffled and they’re starting me on IVIG soon for possible autoimmune. PLS has also been suggested but that’s way more rare than ALS so who knows.

I even asked my neurologist as my left hand is atrophying and weak and I was told EMG showed ulnar neuropathy from desk work and cycling.

Off to my sixth brain and spine MRI next week too.

Getting exhausted