Doubts about dx

[Pete Walsh 23]

Dad is 83 years old. Very healthy. Had RIGHT knee replacement in January 2023. March 2023, his left foot swelled up. Diagnosed w drop foot w blood clot. Continued weakness on LEFT leg. Went for emg, dx w ALS variant. Since then, right leg is not functional as well. I still do not believe it is ALS. I’m still convinced it’s a parasitic infection eating away at his nerves that is mimicking ALS. Any thoughts? Who can I take him to outside of VA? Which medications?

 

[Pete Walsh 23]

VA being Vet Affairs (not Virginia)

 

[Nikki J]

Not sure why you doubt but you can get a second opinion outside the VA. I would probably go to one of the NYC ALS clinics given your location. Not everyone likes the Columbia clinic but for diagnosis they are excellent.

As you know the VA has great benefits for ALS as it is considered service connected

 

[lgelb]

I'm sorry about your dad and we'll support you however we can. For a second opinion, which we always recommend, there are centers in Jersey, NYC, and Philly. If you care to post the de-identified EMG, we could be more helpful. But off the top, parasites do not eat nerves.

If you are talking about Lyme, studies demonstrate the same prevalence of Lyme in PALS as in the general population, and it does not manifest the same motor neuron damage on an EMG or clinically. Unfortunately, some clinicians use the natural desire to wiggle out of an ALS dx as an ATM for treatments that drain patients' wallets without affecting ALS progression.

(I've had Lyme; my husband had ALS).

If you are referring to some other theory of your dad's disease, please clarify so we can be more on point.