PMA
I’m posting this so other can see what I’m experiencing, and because I didn’t find much on PMA on this form.
2015 (late) A coworker of mine who is a health, exercise disciple, told me there’s something wrong with my walk, being an avid cyclist with strong legs and a hard worker I didn’t think much about it.
2018 (mid) I talked to my primary care physician about what I think is a right drop foot, he refers me to a back surgeon. Late 2018 I see the back surgeon who does x rays, MRI and refers me to a Neurologist to cover the bases. I see the Neurologist in October and he does my first EMG.
2019 (January) Back surgeon fuses LS5 to my Sacrum, school of thought was the deterioration in my back was cutting off the nerves to my right leg, I had no chronic back pain. I start using an ankle brace with a strap to my shoe which keeps me from tripping.
2020 CO VID lockdown so I didn’t do a follow up with my back surgeon.
2021(Spring) See my primary care physician and tell him that my right leg has gotten worse, with not much of a response. Start of summer I pursue an outdated prescription for an ankle brace that I got when the back surgery was done. This sends me back to the back surgeon which does x rays, MRI, with a diagnosis of “we don’t see anything wrong with your back”, they dig through my chart and find the report from my first visit to the Neurologist, which was “This could be the onset of a neurological disorder”. They refer me to the Neurologist who does my second ECG and strongly recommends I get a second option. Within a week (miracle) I’m in UC Health in Denver, first day was observations and the physician didn’t think it was ALS because of my upper body strength, she double booked her schedule to see me the next day. ECG was done on my right leg and arm with a diagnosis of PMA, I have nerve lose to my arms, but I don’t have the upper markers so I’m not ALS. I do a follow up with my Neurologist who starts me on Riluzole, and sets me up to start Physical Theraphy and seeing a Pulmonologists.
I get my first orthotic brace for my right ankle, two months later I have one for the left ankle.
We sell our two-story house, sell the RV and move into independent living, the stairs in the house where to much, loading and driving the RV got to be too much.
I’m turned down for any (ALS) clinical studies at UC Health because I don’t fit the time line and I don’t have the upper markers, PMA and not ALS, joking I tell people I’m not dead enough.
2022 The spring of last year I would have told you that I though I’d be in a wheel chair by the end of the year, and I would be happy to see my 70th birthday. Well! I’m still walking, I use a cane, my right leg is all but gone and I have to watch it, the left I can still curl my toes down somewhat. I can lift things with my arms but my legs won’t support much weight. Big box stores I use an electric cart because my legs tire quickly.
Seeing my Neurologist every 3 months, I’m using that as a bench mark.
Each morning is a new day and I try to enjoy it as much as possible.
I thought this was super slow but now after reading it.
