I think I might have ALS

AEOLS

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Hi, male 28 years old here.

I can't belive I'm writing this post, but I think i might have ALS.

I've been having fasciculations all over my body for the last two weeks, and went to see my doctor today.
He didn't seem too concerned, and it didn't seem like he would refer me to a neurologist.

But, after a reflex test he decided that he would refer me to one (I guess there was something off - if I understood him correctly it looked like my left knee "kicked too much out" when he tested the reflexes).

I think this post is as much about me getting som feelings out as it is me questioning that I might have ALS.

He explicitly told me that he in no way could rule out ALS, and that a neurologist should take a closer look at this.

I should also mention that I have a pretty severe health anxiety - it's only 3 weeks since I thought I had a brain tumor or stroke, and got both MRI and MRA - which both came back clean.

I actually went into the doctors office with an expectation that I would get a reassurance that I in fact don't have ALS, but I guess he just couldn't ignore the hyper-reflexes.

So, to sum it up - I have fasciculations all over my body and apparently some hyperreflexes. I have not noticed any weakness. I do have severe health anxiety.
Does this resemble ALS to you guys?

My doctor seemed like he wouldn't tell me anything else than "I can't say either way", so I'm just looking to get your opinions.

Thanks in advance, and I hope this post was appropriate for this forum - please delete it if it isn't.
 

ShiftKicker

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Hello- I think you've already provided your own reassurance. Please also make sure to read this: Important - READ BEFORE POSTING! Answers to common concerns about possible symptoms

If you look up anxiety and reflexes and anxiety and twitching you will also find a a very strong connection. There is so much more to ALS than what most people come here to ask about- it's a very specific pattern of symptoms- and a neurologist may be better at providing you reassurance and explaining why you don't have ALS than your gp.
 

AEOLS

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Hello again.

I went to the neurologist today - no hyperreflexia, no other findings.
Guess my GP was wrong.

Did not take an EMG since he thought I didn't need to, though he would refer me to one if I "could not let this go", in his words.

He didn't look concerned at all about the muscle twitches - and he stated that my twitches didn't line up with "ALS twitches", since you can't feel those twitches most of the time.

I thought that was kinda odd, since I've read otherwise on different websites.
Either way, he's been a neurologist since 1996, and he previously was head of the neurological unit at the hospital in my county - so I guess his opinion is worth listening to, and if he had any doubts I'm sure he would have refered me to an EMG.

To sum it up, and maybe give a little heads up to others wanting to post here:

Don't be me - do not let your anxiety make you jump to irrational conclusions, and don't make unneccessary posts on a web forum meant for those who actually have the illness.

Best wishes to all of you guys, and I'm sorry.
 

lisa g

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That's great news for you. Now take a deep breath and relax. Put those thoughts behind you. Enjoy your family, go on with your life and enjoy this beautiful holiday season. Good luck.
 

AEOLS

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Hi, I'm back again, unfortunately.

Short story: The twitching continued, and I kept worrying about ALS, so I got a referral to get an EMG and that electro-shock thing (don't remember the name).

The doctor found atrophy in my extensor digitorum brevis muscle (the one on top of the foot).
It is quite visible too - on one side i have a pretty big muscle there, but on the other side there is practically just a "hole".

She didn't give me very much information about the tests itself, she just noted it - as well as some "muscle delay" in both of my arms (around the wrists I think).

She would update me with the results within a week, but I am crazy nervous right now.. Atrophy can't be good.

Guess I just need some opinions.
How worried would you be?
Symptoms are wide-spread twitching, atrophy of edb muscle and "muscle delay" in both arms.
 

Nikki J

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Muscle delay sounds like it is describing something seen in the nerve conduction test ( shocks ) not the Emg ( needles). Nerve conduction issues point away from ALS. An example would be peripheral neuropathy which can causes atrophy and is annoying, sometimes treatable and not fatal. of course I have no idea if this is what with wrong with you but if I had been told muscle delay I would have been overjoyed

let us know when get actual results and an explanation
 

AEOLS

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Got the results already.

- Very low amplitude from "nervus peroneus" in left foot, and atrophy (in nerve conduction test).
- Prolonged distal latency from median nerve and ulnar nerve, both sides, as well as reduced nerve velocity (nerve conduction test).
- Reduced amplitude from sensory median on right side (nerve conduction test)
- EMG were fine.

I will get in touch with my doctor, but in the mean time - what does this mean? Any ideas?
 

lgelb

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The key part for ALS is "EMG is fine," since that's the test that's abnormal in ALS.

Sounds like you have multiple nerve problems that are not ALS. You will probably be tested for diabetes, thyroid dysfunction and other conditions that might relate, if you haven't already.

The good news is, you're in the wrong place here and what you have is likely very treatable.

Best,
Laurie
 
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