PLS to ALS

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TippiLeigh

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Jun 13, 2020
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59
Reason
DX UMND/PLS
Diagnosis
07/2020
Country
US
State
CA
City
XXXX
Thank you everyone for all your feedback. I really appreciate it! I FINALLY got an appointment with the academic hospital in a couple of weeks, although this first one is just going to be a video appointment. At least it gets the ball rolling. It's a few hours away, so I hope that this way they can bundle all the tests and everything into one visit the next time. I finally broke down and got a rollator a couple of days ago. I'm mad I waited so long, but I think I was just being self-conscience. I'm in my mid-40's, but I look I'm in my late 20's or early 30's. I was worried how it would look for a young, able-looking person to be scooting around with that. I know it's silly, but I'm still getting used to all of this. It's so much easier to walk with that though. So, so much easier! I was using a cane but it was just too hard for me to be coordinated with it and I kept dropping it. I can no longer really move my left foot/ankle, and my whole left leg is very stiff, so I walk like I have a whole leg cast on. My hands feel more like clubs every day, thus the reason I couldn't really manage the cane very well. I also found out some good news that last October the academic hospital I'm going to opened a satellite ALS clinic here in the town where I live. They're still kind of getting set up, but they'll have a nutritionist, physical therapist, occupational therapists, speech therapists, and social workers. They'll also have a doctor go every 3 to 4 months to see patients. That's great timing for me and my community!
 

morleyde

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Joined
Apr 4, 2018
Messages
27
Reason
DX UMND/PLS
Diagnosis
9/2017
Country
US
State
MO
City
Saint Charles
Igelb,

Do you have anymore information on the "newer EMG protocols that can detect upper motor neuron (UMN) damage, in use at some academic centers"?
I have PLS and am wondering how they would test for UMN damage. Would they put an electrode in your brain where the UMN start?
I was diagnosed almost 3 years ago at Mayo in Rochester, and they did not do any UMN tests, other than clinical evaluation. They did EMG's, but just to evaluate the LMN.

Thanks,
Joe
 

morleyde

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Joined
Apr 4, 2018
Messages
27
Reason
DX UMND/PLS
Diagnosis
9/2017
Country
US
State
MO
City
Saint Charles
I had the MRI/PET scan done at Harvard/MA Gen as part of a study. They did not give me the results because it was a study (What causes Upper Motor Neuron problems in people with PLS and HSP?).
 

ShiftKicker

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Joined
Mar 16, 2015
Messages
3,332
Reason
DX UMND/PLS
Diagnosis
06/2015
Country
CA
State
BC
City
Vancouver
@morleyde I went in for the same study. I did get a call after the first scan last year to discuss (informally) the results. My second session was early Feb of this year, shortly after which everything all fell apart due to covid. I have yet to hear back from them, and I doubt I will! I understand multiple study assistants had to return home and there was one person left dealing with way more admin than they were prepared for. I gather Dr Paganoni was confident the results of the study so far supported presence of inflammation in certain areas of the brain being connected to PLS.
 

morleyde

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Joined
Apr 4, 2018
Messages
27
Reason
DX UMND/PLS
Diagnosis
9/2017
Country
US
State
MO
City
Saint Charles
ShiftKicker,

I never did get a call to informally discuss my results. Dr. Paganoni said she would. I talked to an assistant a month or so after, and they said she was really busy but probably would eventually call me, but not yet. It has been about a year, so I am not expecting one, but would have been nice.
 

old dog

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Joined
Aug 27, 2011
Messages
255
Reason
DX UMND/PLS
Diagnosis
08/2011
Country
US
State
OR
City
Scio
I was diagnosed with PLS in August, 2011. I occasionally have some fasciculations but, so far, have not had the breathing problems or extreme muscle wasting usually associated with ALS. The diagnosis was based on an EMG that didn't show any lower motor neuron involvement. At nearly 81, I'm fairly stable. I'm using the power chair more and have become more awkward with my hands. I have trouble turning pages. It's sometimes difficult to tell whether something is old age or progression.

If I didn't have PLS, I would be a fairly healthy senior.
 
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