I've never been more scared

[shadypenguin]

I have clinical and progressive muscle weakness in my hand.
Atrophy in the right arm.
Active denervation.
Clean MRI.

Today I noticed tongue atrophy and facilliation which has sent me over the edge.

I'm only 22.

 

[Atsugi]

Very strange for a 22-year-old. What's your neurologist say?

 

[Alex123]

Do you have noticed any changes in your voice or trouble pronouncing consonants like "r" or "s"?
Any trouble swallowing?
ALS typically appears when you are over 50. The few that get it while being young have a very slow progression.
You need to have a bunch of other diseases discarded before assuming it is ALS.
Has anybody in your family had similar symptoms?
There are some genetic diseases that resemble ALS. Also it could be MS, some kind of poisoning or even Lyme disease.
I think some venereal diseases like AIDS or syphilis can also resemble ALS. I was tested for everything and after all came back negative then it became more clear that it was ALS.

 

[Atsugi]

Hi, Alex.

Is it really true that your status hasn't changed in 1.6 years?

--Mike

 

[Alex123]

Hi, Alex.

Is it really true that your status hasn't changed in 1.6 years?

--Mike

Hi Mike. Maybe I haven't updated my profile. I would have to check. But my answer to your question is "no". My symptoms have been progressing.

 

[shadypenguin]

I've been dealing with a doctor of physical rehabilitation medicine for neurological pain symptoms up until this point. He recommended I get a neurologist right away and right now I'm just waiting to be seen.

He said he would be shocked if it was ALS but based only on my age alone as my symptoms are obviously quite bad.

 

[shadypenguin]

no trouble swallowing no trouble pronouncing words that I can tell. Nobody in my family has ALS or has had similar symptoms/conditions.

 

[Atsugi]

What does a "doctor of physical rehabilitation medicine" do? Sounds like a good place to get a massage.

Important question: Who told you that you have "active denervation"?

 

[shadypenguin]

Negative. It's a medical doctor specialty area (like how a neurologist is a specialist). They specialize in physical rehabilitation. That doctor gave the EMG and nerve speed test and found the denervation.

https://www.aapmr.org/about-physiatry/about-physical-medicine-rehabilitation/what-is-physiatry

 

[Alex123]

I've been dealing with a doctor of physical rehabilitation medicine for neurological pain symptoms up until this point. He recommended I get a neurologist right away and right now I'm just waiting to be seen.
.

Have you seen the neurologist or still waiting for your appointment?

 

[lgelb]

Yes, PM&R is a real specialty and often staffs MD, ALS, SCI and other clinics/centers.

 

[shadypenguin]

Just diagnosed with 95% confidence by a neuromuscular disease specialist with monomelic amyotrophy.

 

[Atsugi]

Shady, on reading this news, I had two immediate reactions.
1) Sorry to hear it.
2) Glad to hear it.

I'm truly very happy that you've finally got a diagnosis and that it's non-fatal.
I'm really very sad to hear you've got such a debilitating prognosis.

I wish you the best of good fortune. Thanks for telling us about it.