Husband PLS then going ALS,

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sanddmtta

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Hello my husband has PLS but they say it will turn to ALS. My goodness, we wonder how can they tell when it goes into ALS. He has signs of ALS now, and this way we can prepare for this. My husband is progressing and we thought that it is slow. So now is it ALS....... Totally confused. When will it be diagnosed as ALS, as we wish it wouldn't, but if it is, it is. Any help out there? Frustrated.....
 

sanddmtta

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What clinic is the best for diagnosis?

This might help us.......... One doctor says one thing, another says something else.
 

Nikki J

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You need a neuro,muscular clinic for sure. If he has upper motor neuron signs without lower motor neuron signs ( EMG is normal) then they may suspect PLS. However, it is usual and correct to tell you that although it seems like PLS until it has been several years without developing lower motorneuron problems they can not be sure that it is really PLS and not a slowly progressive ALS that began in the upper motor neurons. If this is where you are at no one can give you a time table other than if it does not happen in 5 years then it probably is really PLS
 

avnl

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I think Nikki's summary is spot on.

M has had no lower motor on signs on EMG...last one done by Dr Fink in Ann Arbor MI. M has had progression over the past 5 yrs: bulbar and upper and lower extremities. It has been 11 years since his diagnosis. He carries the diagnosis of PLS and the clinics do not feel the need to redo his EMGs.

I think one can be caught up in terminology...slow progressing ALS fast progressing PLS, it kind of goes on and on. Either way you take it day by day, problem solving and working at making the days count. For us, as M gets robbed of more and more, the fact that his condition is is considered chronically progressive not chronically fatal may not be a such a good thing. That thought rears it's ugly head rarely.
Anna
 

MaxEidswick

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>You need a neuro,muscular clinic for sure

Ditto that!
 
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