First Post on the PMA Forum

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KevinM

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Joined
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PALS
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06/2019
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Hi all. I must say it feels a bit odd posting in this forum after more than three years exclusively in the pALS section. Unless this post stimulates posts or questions from others, I will continue posting in the ALS forums as before. The reason I decided to post here at least this once is the result of my in-person appointment with my neuro specialist yesterday (8/26/22), where he indicated he was becoming convinced that I look like I may be one of only a small handful of MND patients he has diagnosed with true PMA.

My chart will still say LMN dominant in recognition of the fact that most diagnosed with PMA often show UMN involvement at some point in time, though after more than three years I still show no clinical UMN signs. He is firmly in the “MND as a spectrum“ camp, and I think he probably questions whether PLS and PMA should be separate sub-categories. As most all of us know, both are very rare.

I’ve mentioned before his respected expertise and 25-year career, during which he has seen and diagnosed every type of MND, and I don’t doubt his opinion. My in-person appointment yesterday was the first in more than a year, for a variety of reasons involving COVID and two cancellations. During that time, we have had three telemedicine calls to discuss symptoms, medications, my slow progression, etc.

He first mentioned PMA during my last in person visit in 2021, and his notes from that visit and the subsequent zoom calls also mentioned that as a possibility. After his very thorough exam yesterday that included all the reflexes, tests for spasticity and extensive strength tests—we did not do another EMG—he said he felt more confident that I had a very slow progressing PMA. He did say that most of those he diagnosed with PMA had similar lifespans as ALS, but a couple lived quite a bit longer.

Given my ultra slow progression, he felt there was a decent possibility I could fall into the latter group. Of course, the fact still remains that it is progressive and terminal. But with luck maybe I have a bit more time. Best, Kevin
 

Nikki J

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We have historically encouraged those with pma to post in the general sections as there have not been enough pma people with solid diagnoses to form a real group. I can’t think of another person currently but they usually identify as mnd Sometimes they put the pma in a tag line. Unfortunately when we set up categories we had a limit as to number so MNDs besides ALS and uMND / PLS didn’t make the cut

hoping your slow progression continues so
 

KevinM

Senior member
Joined
Mar 30, 2019
Messages
549
Reason
PALS
Diagnosis
06/2019
Country
US
State
FL
City
Tallahassee
Makes sense, Nikki. Thanks for the good wishes re: progression. I hope yours continues as well.
 
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