ALS 17 years after possible diagnosis

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MP77

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Jan 2, 2022
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Learn about ALS
Diagnosis
01/2002
Country
UK
Dear All,

Over 17 years ago my husband noticed that the muscle between his thumb and index finger withered away.
We had gone to see a neurologist who had then brought in his colleagues to check my husband. My husband was about 25 years old at the time.
The majority of the doctors thought it was ALS. We then went to another neurologist for a second opinion and he carried out tests and said it wasn't ALS but an ulna neuropathy caused by my husband having banged his elbow a few months back.
As the years went on and as we were told ALS is a quick degenerative disease we started to feel confident that my husband didn't have ALS as his health remained very good and there was no other weakness or muscle wasting anywhere else. In fact his problem hand was getting stronger.
As you can imagine the initial diagnosis had hit us hard so we were always worried, what if the second doctor got it wrong and he did have ALS.
Recently my husband has been worrying that his other hand is feeling a little weaker but is unsure if it truly is or is just worried because of his past diagnosis.

Could it be possible thst ALS could be dormant for 17 years?
 

Nikki J

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Joined
Mar 22, 2012
Messages
11,735
Reason
PALS
Diagnosis
04/2014
Country
US
State
MA
City
Boston
I have never heard of such a thing. You should see a doctor to get checked out as you would with any health concern.

a few thoughts. The tests that the diagnosing doctor did likely included an emg and ncs. Ulnar neuropathy and ALS do not look alike on those tests. Anyone who said ALS without an emg and other tests should not have. aLS does not improve as his original hand did. The progress of ALS however slow would be more symptoms in the original arm not one hand then the other. I doubt you would be thinking ALSnow without the original misdiagnosis.

perhaps you can have a video visit if in person is not possible now
 
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