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Tedstehr

Distinguished member
Joined
Aug 25, 2017
Messages
199
Reason
PALS
Diagnosis
08/2017
Country
CA
State
BC
City
New Westminster
I couldn't find this exact answer so I'll ask it!
Is it possible I could have PLS? I have upper motor neuron problems, mainly spasticity and balance in my legs. But I have no wasting or muscle weakness to speak of after a year since first symptoms.

But my EMG was dirty and I do have fasiculations. Does PLS mean absolutely no LMN issues?

Thanks!
 
Ted, the jury's out on that as researchers and clinicians are able to detect subtle differences using new imaging techniques- and are revising their understanding of the mechanism of MND. There is such a thing as UMN dominant/onset ALS, which is a slower progression and has primarily UMN issues. The classical PLS description is strict UMN, sometimes with VERY minimal LMN involvement after several years. If you were diagnosed by Dr Briemberg, she knows her stuff. It's likely she detected enough LMN involvement via emg in more than one place for her to say ALS.
 
Everything SK said Is true of course, heck she is one of the most informed people here. I would say though please get a second opinion. I know that is harder to do in CA, but I would still try. Even having a variant of ALS can give you a longer life span, so that would be good to know. I talk to a woman online who has a variant and is now on Year 10, still walking short distances.
 
Ted, You can upload your EMG, if you want.

I've talked to my doctor a great deal about slow progression. I didn't really think I was slow until he said he thought my first symptom was in 2012 when I twisted my left ankle. I do have a lot of atrophy but can still stand on toes and heels.

I think they know so little and there are so many variants.

I wish they could tell us more. I wish they knew more.
 
Fiona, Kim and Lenore,

Thanks for your sage advice. Dr. Krieger said ALS but the visit (after the testing) dealt more with what to do next than any discussion of my variant of the disease. And of course it was my first visit with him so he would have no baseline to determine progression.

I will see him on the 15th for the visit with the MPP from Ottawa. I'll see if I can get his opinion.
Fiona, I do have LNM in different places, so I am betting UMN dominant ALS with slow progression will be the most that can be said.

Thanks all!
 
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