Daignosed w. ALS, Then PLS

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gboyea

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Curiously two different Dr. looked at same EMG and came to a different conclusion. Any thoughts? (diagnosed with ALS, Dec. 24, 2018, diagnosed w. PLS 1/17/19)
 

lgelb

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You can get a third opinion, of course, but the PLS diagnosis will be proved or disproved over time, as you will either show LMN features that take PLS to ALS or you won't.

I'm sorry to hear the news, either way, and welcome.

Best,
Laurie
 

Emanol

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Welcome! My father is also on the PLS/ALS limbo, also with ambiguous EMGs. How has been your progression? Symptoms?
 

gboyea

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Really no progression - except my right arm is painful when I reach for something - also at night when I get up to use the restroom - sometimes I can hardly walk - have to have walker on standby. My friend suggest - just be grateful for each day and don't think about the possibilities - I am trying to do this -but it is sometimes difficult.
 

bhg

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bgoyes, that happened to me too. This is a gray area where doctors have different interpretations. I was dx with probable PLS for several years, then “diverse evidence” showed up on a EMG and I was sent to the ALS clinic with a dx of slow variant of ALS. The head neurologist dumped everyone under ALS. Later a substitute neurologist referred to my PLS! After chatting with various doctors at clinic the consensus is UMND ALS, but the forum puts us under UMND/PLS!!
 

Nikki J

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Mod note : to clarify the forum interest UMND / PLS stands for upper motor neuron disease/ PLS. It was meant to include HSP mostly besides PLS, in other words pure upper motor neuron diseases. We had a limited number of menu choices and were trying to cover everything while having subcategories for the various motor neuron diseases.

If you have a diagnosis of motor neuron disease you of course should pick the forum interest category that best reflects what you been told by your doctors. If asked, I would tell anyone with A confirmed diagnosis of ALS whether lower motor dominant, upper motor neuron dominant or unspecified that the category of ALS is probably most appropriate
 

bhg

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Wow, Thank you, Nikki. I didn't know that. I'll switch over to ALS. All the research papers, etc. use the D to mean dominant, so just assumed.
 

Nikki J

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I am sorry for the confusion. I agree that it is misleading. Limited characters and choices led to this. Apologies
 
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