Diagnosis - questions to ask

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lindseyvicente

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May 13, 2022
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Learn about ALS
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00/0000
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US
State
AL
City
Auburn
My mom (73) has experienced a pretty sharp decline in mobility and function over the last year (now a quad). We thought it was spinal stenosis but after surgery last Dec, she continued to decline. Neurology evaluated her during a hospital stay last month and mentioned potential ALS diagnosis. She had an NCS and EMG last week, and today we have a follow up with neurologist for results. She’s expressed her wishes not to have interventions if it is ALS.
Anyone have any guidance on what questions we need to be certain to ask during this appt? Can neurologists who are not ALS specialists provide any sort of prognosis on what stage she’s in? Thanks in advance!
 

Nikki J

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Mar 22, 2012
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14,280
Reason
PALS
Diagnosis
04/2014
Country
US
State
MA
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Boston
Your post was moved as she is not yet diagnosed. If she is and the doctor is not an ALS specialist a second opinion with one is vital. Really there should be 2 opinions from ALS specialists. Ten percent of initial ALS diagnoses are wrong.

we have a pinned post at the top of this subforum on getting a diagnosis. Questions to ask obviously depending on what you are told if they do say ALS ask if there are other tests that need to be done to confirm and ask about second opinions. If they say they are not sure ask what is in the differential and what tests are needed to narrow it down.

whatever the answer if she has needs for mobility / safety ask for help. Falls are dangerous for PALS and for the elderly. Good luck
 
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