Would like to talk to someone suffering from Primary Lateral Sclerosis

Posted by ssjohns @ssjohns, Jul 27, 2023

Hello. I’ve been suffering with a mystery illness the last eight years. A friend of mine believes I am suffering from PLA. If anybody else out there is suffering from this horrific disease, I would like to talk to you about your symptoms. Thank you.

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Helen, Volunteer Mentor | @naturegirl5 | Jul 27, 2023

@ssjohns What does PLA stand for? What symptoms do you have that your friend believes you might have this?

ssjohns | @ssjohns | Jul 27, 2023

In reply to @naturegirl5 "@ssjohns What does PLA stand for? What symptoms do you have that your friend believes you..." + (show)

So sorry. That was a typo. I meant to say PLS. Primary lateral sclerosis. My symptoms are speech issues having to do with the tongue, swallowing problems, light sensitivity, weakness and numbness in the legs, balance problems, dizziness. I am now in a wheelchair full-time. I have also been told I have Peripheral Neuropathy. A friend of a friend has PLS and her symptoms are very similar to mine.

John, Volunteer Mentor | @johnbishop | Jul 27, 2023

@ssjohns, Thanks for clarifying. You will notice that we modified the title of your discussion so that members with experience can respond and join your discussion. There is an older discussion that has some references that you might find helpful from @colleenyoung and @hopeful33250:

--- Primary lateral sclerosis (PLS) treatment: https://connect.mayoclinic.org/discussion/pls-treatment/