ACCEPTING an MND, ALS, PMA or PLS DIAGNOSIS
A common thread that I come across on forums, FB groups and support groups is confusion and doubt about diagnoses of MND, ALS, PMA or PLS
This was echoed in a recent post of the PMA thread on the PLM/ALS forum:
“I am not a grey person. I am black and white, I want to know what it is and how much time I have left. I was originally told a(sic) PMA but I don’t fit that category completely either. This is all so frustrating!”
I can fully understand the frustration. The real problem lies in the fact that ALL MND variants are still diagnoses of exclusion. Only when all other possibilities are exhausted, will most neurologists give even a tentative diagnosis. Personally, I saw 3 different neurologists before I saw enough evidence that PMA was the most likely culprit.
As a side note, it seems that Binuna Bodies, although said to be found in 80%+ of ALS patients upon autopsy, occur almost exclusively in the Lower Motor Neurons. Therefore, although they may be useful in diagnosing PMA, ALS, by definition, requires BOTH upper and lower motor involvement.
Unfortunately, we are still in the early stages of our understanding of the class of ailments lumped together under the heading of ALS (or more correctly Motor Neuron Disease). I remember, not so long ago when cancer was a term for a supposedly singular type of disease. Now it is a generic term relating to a myriad of differing presentations and locales within the human body. Today, there are diverse diagnostic tools and disease pathways with even more treatment options depending on the site and type of the disease.
For me, this is what MND will finally become, a whole class of diseases with differing symptoms, treatments and outcomes. Unfortunately, I suspect that we are currently so far behind the 8 ball that nothing significant will likely happen during my (remaining) lifetime.
Over the last few years, I have come across and corresponded with scores of PMA-diagnosed pALS and, so far, although we have many things in common, there is much that differs in our cases, histories and progressions. I have finally come to terms with the fact that I alone must decide what I believe based upon all the information available to me.
I have decided that PMA indeed seems to be the most logical diagnosis. No one even knows if the currently accepted treatments for ALS (primarily Edaravone/Radicava and Rilutek/Riluzole) are suitable, or indeed beneficial, for PMA patients.
In the end, as long as I remain convinced that no other diagnosis better fits my situation, I will remain under the ALS/MND umbrella because the majority of the resources made available as a result are very helpful.