Hoping for misdiagnosis

[zyrgo]

Hello everyone,

I am 22 year old male from Nepal.
I was diagnosed with ALS earlier this month.
Weakness started around 9 months ago and currently only my right hand isn't weakened.
Muscle wasting has started on my left palm and shoulder, though it is small it is clearly visible.
Other than that I have fasciculations on my feet, thigh, shoulder and sometimes tongue too and also shortness of breath.
But doctor diagnosed me with ALS without conducting EMG, other than that my all reports like MRI, NCS , etc are completely normal.

Is it possible to diagnose with ALS without EMG?

 

[Bestfriends14]

Hi there,

I'm sorry you find yourself here. I've not heard of someone being diagnosed with ALS without having an EMG. I know neuromuscular specialists are difficult to find in NP, but is there a way you can find one in Kathmandu who you could get a second opinion from? I would say you could go to Delhi, but with the situation that is going on there, it's best to stay put for the time being.

I do highly recommend a second opinion being that a diagnosis of ALS with an EMG is most unusual. I hope you can manage to get one and get further tests to see what is going on and to get more solid answers. On an unrelated issue, Nepal is a lovely country with truly beautiful people. I have spent a lot of time there. Please come back and update the forum if you get another opinion.

Good luck to you

 

[lgelb]

Agreed. Perhaps if you ask for an EMG and that does not happen, next try the Annapurna Neurological Institute & Allied Sciences in Kathmandu.

 

[zyrgo]

I was diagnosed in Annapurna Neurological Institute & Allied Sciences in Kathmandu by a senior doctor, who happen to be my sister's friend. My sister is also consultant neurophysiotherapist. At first I was going to have EMG because of my fasciculations , but the doctor observed progressing muscle wasting in my hands and shoulder and instead to EMG he asked to peform CPK test and diagnosed with ALS

 

[lgelb]

I do not understand why he would not order an EMG. It is considered internationally as an essential test to help rule out more treatable causes. Progressive muscle wasting is certainly caused by more illnesses than ALS. These are things I would say to him.