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Sidney

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Joined
Jan 9, 2016
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Reason
Learn about ALS
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00/0000
Country
UK
State
LO
City
London
Hi.I am at the moment between neuro appointments having had an inconclusive EMG and what turned out after back MRI's to be a wrong diagnosis of radiculopathy.I'm starting the cycle again of clinical exam and EMG.

In the meantime my voice has become hoarse,croaky and quieter.I m clearing my throat all the time and my chest is sore.The helpline lady here in the Uk helpfully informed me that complete voice loss could be a first noticeable symptom?Is this true in everyone's experience?Has anyone heard of that or do you have to have other bulbar symptoms?

To PALS who may reply than you for your time.It is hugely appreciated.
 
Nope. the description you wrote about your voice has nothing to do with ALS.

Everyone here, the people who have experience with the true face of ALS, has said you aren't describing ALS, and you've already seen one (or two) neurologists with an EMG, but they have not detected ALS.

I'm wondering why you're taking the Helpline lady's word over everybody else's?

Have you involved a GP medical doctor? They are trained and experienced with leading health investigations, and can refer you to the appropriate specialists, in the proper order, to get a reliable diagnosis. If you're focused on using neurologists, they'll continue to try to find something in your nervous system, but they can't evaluate the many other systems that should be investigated.

Seriously, Sidney, you seem to be chasing ALS, instead of trying to find out what the problem really is.
 
Hi Mike.Thank you.I promise I'm not chasing ALS.I do though have fasiculations constantly(understand not necessarily ALS),plus muscle wastage in calves and chest .The voice problem is new to me and the neurologists who don't know about it. I am seeing my GP tomorrow to see if it's a respiratory problem.I suppose I feel I had a shoddy EMG and I didn't have faith in the first Neuro.The second left room for doubt and asked me to come back as he wasn't sure.I am in limbo land for sure but again stress not a 'chaser'.I am worried about losing my voice but presumably without other bulbar symptoms like slurring etc this is unlikely?Can I ask from your experience what you think?And again I appreciate the time.Sincerely.
 
Others are personally familiar with Bulbar. In short, it's about a paralyzed tongue that causes profound slurring of speech and choking on thin liquids. It is either the beginning of Bulbar ALS or the end of a long bout of limb ALS.

Look in the mirror. Move your tongue left, right, up, down. You don't have Bulbar ALS.
 
Thank you Mike and without wishing to appear persistent can you lose your voice without bulbar symptoms?
 
Yeah, it's caused by a virus or bacteria, not ALS.

You appear much more persistent than perhaps you should.
 
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