Is it possible to lose your voice first even with limb onset?

[Alastor M]

This has been really bugging me lately...my genetic variant of MND has been categorized as limb-onset juvenile ALS, and yet...my voice is failing me first? I'm perplexed. How common is this?
Finally got a foot brace...it appears my legs are losing their strength at a sluggish yet steady pace, so my decline is tolerably slow, most likely because of my age.
And yet, I can barely talk.
I've resorted to sign language recently, it's a blessing my sister is deaf and therefore fluent in ASL. lol
Enjoying the simpler things in life, and thanking God for every day He has given me thus far!

 

[trfogey]

When you say that your voice is "failing", what do you mean, Alastor? Articulation/pronunciation problems ? Insufficient volume (loudness)? Vocal cords don't vibrate?

Also, please note that some genetic variants don't behave and progress the same way "sporadic" ALS does. Your neuro may (or may not) have that kind of information at hand -- depends on how rare your combination of mutations is.

 

[Alastor M]

It's definitely a volume issue. My words aren't garbled much, and although my tongue fasciculates like crazy and is slightly atrophied....it barely bothers me at all.

 

[Lavender Lady]

when i was first diagnosed with limb onset i already had pseudobulbar symptoms. i ave rapid progression and am starting to use dynavox.

 

[Tom's Support]

Tom's progression has never been what they call "textbook". Something tells me they need to rewrite the book. I think that each and every case is special and unique, just like the PAL that is involved, including the way and the places that the weakening develops.

 

[Jellycat]

I don't know the answer to your question. My mothers als was bulbar onset (slurring, swallow issues) but within a couple of months was accompanied by other signs in her legs. By the time she was a month post diagnosis and had lost all capacity to form a word she was also falling frequently. Distinguished neuro swore it was to do with her blood pressure and not the disease. Experience proved him wrong. What do I think now? The label of onset is just to do with where the neuros can evidence it first. Doesn't mean other stuff isn't affected. Too little is yet known about this disease. Roll on more and greater reasearch.

Now I do know none of that helps you much. I can only suggest you continue to find ways round the voice issue. Sign language is great. What about an amplifier if volume is your issue, or other assistive technologies. Volume was never an issue with us. It was articulation which disintegrated. First certain sounds, then all of them until nothing was left. Anything which helps ease the effort for you and helps keep you communicating with friends and family seems good to me.

I don't believe we can predict what als will touch next so if you can just do all you can to live as fully as you can right now.