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cooper

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Joined
Jan 24, 2015
Messages
1
Reason
CALS
Country
Uni
State
Tennessee
City
Cookeville
The question I have is how long did it take for anyone's neurologist to present the diagnosis that it is definitely ALS? My fiance had 4 EMG's in 2014 after presenting with peripheral weakness in his arms along with muscle wasting and a loss of 30lbs. in the last 6 months. We have been to 2 neurosurgeons and 2 neurologists one of which is at UAB/Birmingham (the textbook writers for this disease) and still no answers. This situation has become very frustrating and disheartening. Please, if anyone has any comments they would gladly be welcomed. Thank you!
 

affected

Guru status reached
Joined
Apr 26, 2013
Messages
12,997
Reason
Lost a loved one
Diagnosis
05/2013
Country
OZ
State
AU
City
lala land
What did the different neurologists say?
What were the EMG results?
 

ECpara

Senior member
Joined
Jan 7, 2012
Messages
605
Reason
Lost a loved one
Diagnosis
02/2012
Country
US
State
GA
City
Thomasville
My husband was diagnosed after his first EMG. If your fiancé has had four EMGs with no diagnosis, the doctor must not have seen anything conclusive. Clearly something is going on, hope you find answers soon so you all can have peace of mind. Good luck!
 

Vincent

Senior member
Joined
Dec 30, 2013
Messages
987
Reason
PALS
Diagnosis
08/2014
Country
CA
State
ON
City
Barrie
I have had EMGs NCVs and MRIs so often over the past 2 1/2 years I've lost count. The neurologist at Sunnybrook ALS clinic says he can't definitively say ALS (predominately LMN symptoms) but I need to be on the ALS clinic and taking riluzole. I had my 1st visit on the 13th and they want me back on the 3rd to follow up on low breathing score and possible bipap. I'm also registered with the ALS society. I have foot drop on both sides and a matching set of AFOs to go with it. Don't know what to call it but it sure sounds like ALS to me.
Vincent
 
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