I do not remember whether I just came across the site by accident or someone recommended it to me. Whatever the case, this site offers more information and support than any other source. Below is the message that I left for fellow members:
Interests: Advocacy and Working with my Condition
I have spent the last year trying to get a definitive diagnosis for my progressive muscle weakness and finally have an answer that makes sense (even though it sucks!).
From here on in, my only goal is to do everything that I can to maintain a reasonable quality of life and to extend it as much as I can. In so doing, perhaps I can benefit others as we make this journey together.
Patients Like Me is a large and active community of Patients and their caregivers where they can exchange information and give mutual support. The ALS/MND section has thousands of members although there are relatively few with PMA (Progressive Muscular Atrophy). In any event, much of the information on any variant of Motor Neuron Disease will likely apply to PMA.
This was the day that my journey with PMA – Progressive Muscular Atrophy really began. Although I had been diagnosed with an unspecified variant of Motor Neuron Disease (MND) back in October of 2017, nobody, including myself, seemed to have a great deal of confidence in that diagnosis.
In spite of the fact that the previous neurologist had scheduled no follow-up and I had referrals from 2 different physicians, the hospital seemed reluctant to give me a second appointment. In fact, even after a consultation was set up, the neurologist’s assistant called me to try to convince me to forgo the appointment because, in her view, I didn’t really need it.
Nevertheless, I persisted and after a virtual repeat of the visit to the previous neurologist, I was told that I had PMA. Two big takeaways from that discussion were that I would almost certainly end up in a wheelchair and that my life expectancy was anywhere from 2 -5 years. The first part will almost certainly become true since, 18 months later, I can barely walk with a cane or walker. The second part though is less certain. Because PMA is so rare and, in the early stages, is often misdiagnosed, it is hard to get valid data on progression and outcomes. Nevertheless, after reading most of the literature available on PMA and based on my current progression since symptom onset, I would appear to be in the ‘slow progression’ category.