It took a month to get an appointment with a rheumatologist and nearly that long to see a neurologist. The first visits were eventful. Based on symptoms and tests, an EMG, and other neurological criteria to date, he concluded “This could be ALS.”

The problem was the order in which ALS first manifests itself was abnormal. Most ALS patients have limb weakness, then issues with swallowing and speech. For me, none of those were affected.

My basic symptoms were unchanged. Mild fatigue, weak back muscles, cramp fasciculations, benign fasciculations, and labored breathing. Neurologists also look for movement disorders and I had a few which disrupted the look for ALS.

First, the muscle cramps. Medicine helped to relax all the rest of my muscles but not the ones that cramped. Second, during tests, hands and arms are whipped into various circular motions as the neurologist looks for a hitch in the movement. I had a distinct one in my right arm, and an odd gait in my right leg.

Parkinson’s disease?

I did not respond to typical Parkinson’s medicine; carbidopa levodopa. Also, the hitch in my right arm came from a fall decades earlier which limited range of motion. The knee? Another accident. Not Parkinson’s.

Symptoms worsened. What’s going on?