33 Year old male terrified about als

[Jabujj]

Hi everyone. As the thread title states I am terrified I have Als I read the sticky stating the odds and everything but here are my symptoms.

I played guitar and I noticed my voice changing as I could no longer hit certain notes which I found weird. Wrote it off as getting older.

3 months ago I started getting muscle cramps starting in my hands and feet that come and go but now I have cramping through my body. Saw a physio who couldnt figure it out and a chiropractor. The chiro made note that my reflexes were super sensitive to the point of being abnormal.

I have fasculitations constantantly in both my calves that are evident. I also have muscle twitching throughout my body.

I saw a GPS and he noted slight atrophy of my right pec in comparison to my left.

My tongue always feels funny like I ate too many sour candies.

Lastly my hands are always shakey holding objects especially at arms length.

I had a MRI to rule out MS. The MRI came back normal.

I am stuck waiting for a neuro appointment that is taking longer than ever because of covid.

Terrified

 

[KarenNWendyn]

I’m glad you read the sticky. It doesn’t hurt to read it more than once.

Most likely you don’t have ALS, but it’s still a good idea to get checked out. Twitching is common, nonspecific, and meaningless in the absence of muscle function failure which you have not described. Voice changes can happen for a number of reasons. GE reflux being a common one. If you don’t have slurred speech that others notice, that’s a good sign.
Feeling weak or feeling “funny” isn’t typical of ALS.

And hyper reflexes are nonspecific. I honestly wouldn’t be worried based on what a chiropractor told you about your reflexes.

 

[lgelb]

Dehydration/food choices are frequent culprits for what you describe, sprinkled with pandemic or other anxiety. The intention tremor you describe might respond to a low-dose beta or calcium blocker -- something to ask your primary care doc about.

I agree there is no reason to think about ALS.

Best,
Laurie

 

[Jabujj]

Hey Karen, thanks for your answer I just have a question.

What I read in the sticky seems to contradict what I have read on the internet.

The sticky says "Als is about failure—falling down, being unable to stand on your toes or heels, being unable to button your shirt, being unable to lift your hand, being unable to open a ziplock bag, etc. It is not about these things becoming more difficult. It is about these things being impossible..." it goes on to say that it really is about waking up one day and something just not working....

But everywhere else on the internet says Als is about progressive muscular weakeness....muscles getting slower weaker as opposed to all of a sudden not being able to lift an arm...

Lou gehrig for example still played baseball with his disease but his skills and stats were just declining...

Can you help me clairify?

 

[Nikki J]

ALS involves the progressive failure of individual muscles. As it says in the sticky it isn’t as if a whole limb is suddenly affected. It is one little area snd then the next. First you can’t do one thing then a few more etc. you can’t button a shirt then you can’t hold a cup then you can’t type then you can’t bend your arm and so it goes until you are paralyzed unless you die first

baseball involves many many muscles Lou Gehrig used what he had left until he couldn’t any more

 

[Jabujj]

Just got back from my neuro appointment. He is sending me to a motor neuron clinic for an emg. Which has me freaking out. He said there is an 80/20 chance I have Als....80 representing the chance that I dont have it.

He noted atrophy in my right chest, fasiculations and brisk reflexes. So I'm not sure how he's is 80 percent sure I dont have it....

I told him about the painful cramps I get and he said cramps aren't part of ALS......seriously?

I also told him my breathing is more shallow and he told me it's just anxiety....when I cant take deep coughs or laugh or yawn properly.....

More concerned now but I guess there is nothing I can do but wait for the emg....

In terms of general weakness the only thing I've noticed is my coordination with my right hand in terms of getting pills out of a bottle suck..

Am I just gonna wake up one day and be slurring my words

 

[KarenNWendyn]

Is the neurologist who said 80/20 a neuromuscular specialist? Doctors don’t usually hand out percentages like that, so I would take it with a grain of salt especially if he is not a neuromuscular disease specialist.

The EMG will probably narrow your odds down to 100/0, with 100 percent being the chance of not having ALS.

Go out and enjoy your day. I wish I had your odds.

 

[Jabujj]

So I've seen two different neurologist now. Both have shifted their opinion and think I have ALS.

I got the notes from their appointment. Key findings were:

- hyperflexia in all four limbs
-constant muscle fasiculations in calves and arms
- atrophy noted in right arm bicep, right pec and right legs as well as slight atrophy on tongue.
- they notes ibcomplains of constant hand and foot cramps and all blood work is normal.
-MRI shows slight narrowing of spinal canal in several cervical vertebraes.
- slight right hand clumsiness with tremor.
- strength in all areas is fine.
- vocal chords changed.



Awaiting an emg to confirm still but I dont get. How can this be ALS when I dont have any weakness....

I can stand on my heels and my tippy toes. I passed all the push pull test. My grip is strong. I can whistle, snap my fingers, pick up small objects with my hands turn keys etc... does the right hand clumsiness indicate weakness?

Just really sad cause I do know I have ALS. I can attach doctors report if need be ..

Does creatine kinase level mean anything in early ALS? Mine is in normal range but towards higher end

 

[KarenNWendyn]

You can’t be accurately diagnosed with ALS with normal strength and no EMG.
Were either of these neurologists neuromuscular specialists? You need to see one.

 

[lgelb]

I don't see any notes to the effect that they think you have ALS, so yes, I'd be interested to see those notes, and also the EMG report. Those might help us answer your questions better.

 

[Jabujj]

Here are the reports. The impaired finger tapping he just meant it wasnt as fast on my right as my left.

 

[KarenNWendyn]

This is not a diagnosis. They are merely mentioning that motor neuron disease is a possibility that needs to be ruled out. Please see a neuromuscular specialist.