Just saw Neuro for my wife 47 hrs old. We have 2 kids 11 and 13. I noticed the summary sheet a section called diagnoses. It listed one of the diagnoses we knew,and some new ones. The new ones were Myoclonus and Upper Motor Neuron Disease. Is this just telling me that she could have any of the MNDs? I am wondering why they would not explain this in detail as I had asked specifically "What are we looking at, can we rule something out?" I will be sending an email. I am just trying to not freak out.
What does diagnosis "Upper Motor Neuron Disease" mean?
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If she only has upper motor neuron disease in the world of MND that is good news. ALS involves the upper and lower motor neurons both and as you know is a fatal disease. Upper motor neuron disease without lower motor neuron involvement is degenerative and disabling but if it stays upper motor neuron only for several years it is usually classified as PLS and people can live with that for a long time. Upper motor neuron damage is generally determine by clinical exam. Has she had an EMG? That looks at lower motor neuron involvement. If she had a normal EMG and an abnormal clinical exam that would explain the notation. They will not call it PLS until several years have passed as it sometimes happens that lower motor neuron involvement comes later and then it is ALS. Obviously you would rather have neither and there are some other neurological conditions that cause an upper motor neuron syndrome such as HSP. There is a PLS forum lower on the main forum page
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Edward, did the Neuro perform a Babinski Toe and Hoffman Test on your wife? These are key indicators of PLS - Upper Motor Neuron Disease.
Thank you for the information. Very helpful. I do know she has a positive babinski. I do not know about the other test. As far as EMG I think that is going to be the next phase of testing. Thanks again for the help.
Hugs and prayers for all. Very few understand this hell.
Hugs and prayers for all. Very few understand this hell.
MaxEidswick
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make sure you get a second opinion from a motor neuron qualified neuro, note: most are NOT ALS/MND (Motor Neuron Disease) experienced!
fwiw,
Max - Sunday, February 08, 2015 1:16:24 PM
ALS sucks, but It Is What It Is ... and someone else has it worse so I'll try not to complain today!
onset 9/2010, diagnosed with ALS by Stanley Appel 8/29/2013
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fwiw,
Max - Sunday, February 08, 2015 1:16:24 PM
ALS sucks, but It Is What It Is ... and someone else has it worse so I'll try not to complain today!
onset 9/2010, diagnosed with ALS by Stanley Appel 8/29/2013
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