autopsy showed he definitely had ALS?

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MtPockets

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Joined
Jun 1, 2006
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1,544
Reason
PALS
Diagnosis
05/2006
Country
US
State
Ms
City
Gulfport
I do not want to rehash an old issue, but felt I needed to share with everyone what I was told by a leading Neurologist at an ALS Clinic. I do not do this to scare anyone, just trying to open everyone's mind to the hardness to diagnosis ALS sometimes even for those who treat it on a regular basis.

I went to an ALS clinic in Louisiana, and was told by the ALS Neurologist, Dr. DeAlvare, that he had a patient, just a few months before I came, that he ran all the tests on and told him he did not have ALS. Negative EMG, negative NCV, everything was clean, from a neurological point of view, etc.

His patient then went to John Hopkins and got the same Dx. Three months later he died and the autopsy showed he definitely had ALS. The Doctor was confounded and said sometimes, you just can't DX ALS. The textbooks sometimes do not have the answer. I know we have made many strides in improving DX of ALS, but there is always that element of mystery, the unknown.

I know many here hate to hear of things like this, but it is a fact of life. Only God knows sometimes what is going on with our bodies. Man does his best to guess at it, but ALS is so elusive, almost like a criminal hiding in the bushes.:twisted:
 
capt al

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thanks for the story, i don't think anyone will trust a neuro again after hearing that................only kidding lol
take care
caroline
repeated from "my journey" thread:-D
 
Kinda makes sense when my dad was diagnosed even tho' 3 siblings before him had had it the neuros took ages to diagnose- kept him in hospital, specialist did EMG, detailed examinations by 2 neuro consultants and others, speech therapy assessment and more- frustrated me, but also I appreciated the care and attention they gave him and all on our UK NHS. Tho' begs the question when are they gonna get somewhere with this?!
Dee
 
All I can say is AMEN to that.
 
Thanks Al, for sharing this with us. Read the whole article, and it does make sense to me. God bless each one of you.

Irma
 
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