ALS, “Other” Diagnoses and PPS
Original Post: Has anyone also been diagnosed with ALS running concurrently with PPS? My husband has really gone downhill this past year and has weakness in his hands, no grip, can barely stand up with crutches, his voice has gotten weak and is having trouble swallowing. ALS was mentioned to us a year ago, but we kind of let it drop thinking all the things he was exhibiting were from PPS. Does anyone know the percentage of people who develop PPS? I know other health issues can mask themselves when they are probably PPS showing up.
Dr. Bruno’s Response: Eventually, 100% of polio survivors will have some symptom related to their having had polio. Of the thousands of PPS patients we treated, we had one with ALS. That being said, PPS is ALWAYS a diagnosis of exclusion.
The weak voice and having trouble swallowing are probably what his physician has focused on. Your husband may need an EMG and an evaluation by medical center neurologists who know ALS.
Additional Response from Dr. John McFarlane (from the UK): Richard is absolutely right. All polio Survivors will eventually present with some symptom of PPS. Studies that have been published over the years give the incidence of PPS in polio Survivors ranging from as low as 20% (Norway) to some as high as 80%. Some people seem to be fortunate in not presenting with, or not admitting, symptoms. Every person is different and as we are finding there are many siblings who did not present with paralysis in the chronic phase who are now showing same signs as a sibling who had paralysis. It would be great if we could ever find a certain way of diagnosis as opposed to one of exclusion.
Dr. Bruno’s Response: Agreed, John. But the fact that "non-paralytic" polio survivors (and even undiagnosed "polio suspects" as discussed in The Polio Paradox) show PPS symptoms demonstrates how hard it would be to come up with a diagnostic test to "count" and measure the reduced functioning of remaining, poliovirus-damaged neurons that is causing fatigue and muscle weakness.
People commonly say that polio survivors who were most affected by the polio are the ones who get PPS. That's absolutely not true and makes no sense. If your legs were completely paralyzed in 1952 and they’ve been paralyzed ever since, you're not going to develop leg muscle weakness later in life.
It's the folk who were severely affected and then recovered almost completely who had the fewest number of poliovirus-damaged but overworked neurons to lose.