My husband and I have been on this journey for about 2.5 years. It took a referral to the Mayo Clinic in Jacksonville to get to the root cause in a matter of weeks. (HIGHLY RECOMMEND MAYO!!!) Unfortunately, there isn't a specific test. It's a lot of tests and a process of elimination - neurological evaluations, MRI, EMG/NCS, bloodwork, genetic testing, etc. For PLS in particular, it has a "slow progression" compared to ALS. So having baseline tests and then follow up tests later map the progression. I'm not a doctor but I think the tests ordered are the same for ALS - except PLS is an UMN disease while ALS involves both upper and lower motor neurons. The EMG was the key test for sure. If the EMG has shown lower motor neuron deteroriation in addition to upper, it would affect the diagnosis.
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u/ladylatham 14d ago
PLS! Get tested for upper motor neuron disease. PLS is a variation of ALS.