EMG

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Snowbird270

Member
Joined
Apr 18, 2020
Messages
13
Reason
PALS
Diagnosis
02/2020
Country
CA
City
Delta
Hi, I had a abnormal NCS and EMG.
A year later the same test abnormal with no Changes. Same score. Has anyone come across this?
I have had some progressive foot drop and progressive hip strength.
Thanks.
 
I'm not sure what you mean - were you actually diagnosed with ALS? Most PALS do not have an abnormal NCS and an abnormal EMG could mean anything on a huge range of scales.
 
If you were diagnosed after the first emg what was the reason for the repeat? Generally once diagnosed PALS do not have a repeat clinical emg. Are you in a research study? Or did they have a question about your diagnosis?
 
I completed: I was diagnosed after the third NCS and EMG with “probable ALS” I had a second opinion which agreed I had ALS. I was re-assessed a year later. My EMG to upper arms showed no change and NCS to all limbs had not changed. All my reflexes are brisk, 3+. So normally they do not reassess? Maybe because they called it “probable ALS” and not “definite ALS”
 
probable ALS means ALS in 2 body areas ( definite is 3 and possible is 1). Really misleading terms because they are all ALS ( new diagnostic criteria have been developed that eliminate those terms finally). It is unusual as I said for anyone with any of these diagnoses to be re emged unless there is doubt about the diagnosis. So you probably won’t find anyone to answer your original question
I am glad you had a second opinion I hope they were a neuromuscular specialist
 
Hi Snowbird- welcome to a fellow person from the Lower Mainland and so sorry you find yourself here.

Have you been referred to the centre in Vancouver? Not sure if you'd be sent there or if there's a specialist in Surrey to go to to spare you the travel.

~F
 
Hi, thanks for your response.
I find this whole dignosis overwhelming! How long does it take to come to terms with it?
Also are you taking any medications to slow down the disease?
Thanks!
 
Getting a correct diagnosis can take awhile. I find you take it day by day. As far as medication to help slow progression I take Riluzole and do monthly infusions of Radicava.
 
Has anyone with limb onset (at the earlier stage) experience joint pain.
I can barely walk due to hip pain and hip weakness.
thanks!
 
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