From Retirement Medical Issues

The most important point about ALS is in  Dr. Karimi’s evaluation of 1/7/19. She said I definitely don’t have ALS because after 9 years (now 11) there’s virtually no evidence of muscles wasting away. She says what I have is a combination of two motor neuron diseases closely related to ALS: PBP, Progressive Bulbar Palsy (speech & swallowing) and PLS, Primary Lateral Sclerosis, (spasticity).

On my most recent visit to the ALS Clinic it seemed like this particular group of specialists is trying to break it to me gently that I have ALS. My regular neurologist, who is not part of this clinic, insists that since I have virtually no weakening of muscles 9-1/2 years after the initial symptoms, what I have in addition to Progressive Bulbar Palsy is Primary Lateral Sclerosis (PLS), not Amyotrophic Lateral Sclerosis (ALS). It’s not a nitpicky semantic quibble, but in my case the difference between life and death.  Why the very rare PLS is not ALS is described in this Q and A article about Upper and Lower Motor Neurons.

There is a section in the Past Visit Information form that they give you as you’re checking out called Health Problems Reviewed. It always seemed to me that’s where they name the illness or issue they treated on that visit, in other words your diagnosis. The first time I saw the doctor in charge of the ALS Clinic for an intake evaluation, 7/1/16, she put Progressive Bulbar Palsy, Motor Neuron Disease.  After my first clinic visit, 8/18/16 she put Progressive Bulbar Palsy. For my second clinic visit, 11/10/16, Motor Neuron Disease. But after my third, and most recent clinic visit, 6/22/17 she put Amyotrophic Lateral Sclerosis.

The speech therapist reminded me, as she has done every time, that I should be taking advantage of the availability of speech devices that are activated not by fingers on a keyboard but by the eye gaze, for when your fingers can no longer type. 

The pulmonary doctor prescribed two machines for when the muscles are no longer able support breathing.

The representative from the ALS Association gave me the red ID card to give emergency responders so they know I have ALS.

Here is an excerpt from the NIH Motor Neuron Disease Fact Sheet for What Are the Symptoms of Amyotrophic Lateral Sclerosis (ALS)?