3rd post. Could this be bulbar ALS?

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Txu4urtime

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My apologies everyone. Just an update please.

Please do not feel need to reply and please can you kindly wait for the results of new tests before closing post.

Top NM Dr and Director of Top Internationally known ALS clinic and research centre of a large neurological teaching facility has reviewed all my 5 EMGs and assessed me.

I’ve been told atypical presentations are not the norm but not uncommon. It’s very heterogeneous.

Given progressively worsening bulbar symptoms and new muscle wastage they ordered in mid May:

- new EMG: says they have seen cases of clean EMGs in limbs for months.

- Lumbar Puncture looking for neurofilaments (given clean limb EMGs but worsening bulbar symptoms)

- ALS Genetic Testing panel.

Thank you for letting me update you. I will post results when available.

AJ
 

affected

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What is appropriate is that this thread is closed as you were asked not to start another.

Once you have a full diagnosis, come back, make a thread and advise us so it helps others who worry they have ALS despite reassurances here.

You last thread was closed with this line:
"I hope you find the help you need, but it's not here. Accordingly, I'm closing this thread. Please do not start another. "

We are truly sympathetic to your concerns, but our time and energy is consumed with ALS.
There are forums for undiagnosed health issues you can search for while you work with doctors.
 

ShiftKicker

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Previous posts here:


As Tillie has noted, you were asked not to start another thread. It's not quite clear what this forum can do for you unless a diagnosis of ALS is made. Please only post once you have received your next emg and testing results. Until then, you are speculating only and that is not helpful. It is hoped you are also receiving some help with anxiety arising your health concerns.
 
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