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johndoejohndoes

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Learn about ALS
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State
FL
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Tampa
Hi - I’m a 27 year old male and I’ve been noticing some weird symptoms over the last 6 months.

- Fatigue/Tiredness
- Ear Ringing
- Off Balance/Vertigo
- Headaches
- Frequent Urination
- Anxiety
- Heart Palpitations

I saw a few specialists and everything was normal. I have Hypothyroidism but my TSH levels have returned to normal with daily medication. My Neurologist ran an MRI 6 months ago and everything came back normal (I assume he was looking for MS). Over the last month though I’ve developed some new symptoms.

- Facial Numbness/Twitching
- Twitching in Toes/Legs/Arms Hands
- Cramping in Hands/Forearms
- Clumsiness
- Pins in needles sensation in feet

I visited my Neurologist again and he did a physical test and said everything looked normal (there was no weakness). I can walk on my heels and toes just fine, run up and down stairs, jump up stairs, etc...But I requested an EMG and Lyme Disease Test.

He is running an EMG on my Right Arm and Left Leg (since that’s where the twitching started) but it’s occuring on both arms and legs randomly (but not consistently).

If I had ALS would both arms and legs need to be tested, or is it sufficient only doing one arm and one leg since random twitches are happening everywhere? I just want to make sure the proper tests are being run.

I know I’m very young so the chances of having it are very, very rare...but I just want to make sure my doctor is running the right tests since I had to be adament for him to actually run them.

Thanks!
 
Based on your reported symptoms, nothing states "ALS". I would refer you to https://www.alsforums.com/forum/do-...-common-concerns-about-possible-symptoms.html as well, as it answers pretty much all of your questions. Your entire first set of symptoms are in NO WAY associated with ALS. The second set of symptoms also do not say "ALS" because you lack any of the unique array of symptoms that DO come along with ALS.

Best wishes in your continued search for what is causing your symptoms, but ALS is not even on your horizon. That's really good news.
 
Yes, one arm and leg would be sufficient. EMGs in ALS show nerve damage before symptoms become apparent in a given limb or area.

You don't have ALS, though.

Best,
Laurie
 
OK, John Doe. I'll be as helpful as I can.

Go straight to therapy. Here's why:

You're 27. Your spelling and sentence structure tell me you're educated.

But you took this list of symptoms:
- Fatigue/Tiredness, - Ear Ringing - Off Balance/Vertigo - Headaches - Frequent Urination - Anxiety - Heart Palpitations - Facial Numbness/Twitching - Twitching in Toes/Legs/Arms Hands - Cramping in Hands/Forearms - Clumsiness - Pins in needles sensation in feet

and, despite having the Internet and a neurologist at your disposal, you came up with ALS. Truly not thinking straight at all.

Worse. that neurologist has 10-20 years of medical education and experience, but you insisted SO MUCH on second-guessing him that he actually caved and gave you an expensive test, taking an appointment slot away from someone who actually needed it.

That was damaging to everybody, including you, by feeding your anxiety.

Hope you paid cash.

Yeah, I'm unsympathetic. Regardless of how I feel, I'll give the best advice I think you need. Go straight to therapy. Seriously.
 
Thanks for the feedback. The only physical limitations I feel can be compared to a forearm workout (even though I haven’t worked out).

My hands feel a bit fatigued because my forearms feel like they’ve been worked out.

Sorry for the worrisome post but o appreciate the feedback. My main question was whether or not the EMG needed to be done on both hands and feet....I appreciate everyone’s feedback.
 
Please take what Mike says seriously.

If you had ALS, testing one limb would be sufficient. But you don't have ALS.
 
Thanks again for your insight.

Tonight my left tricep randomly started twitching...I assume (and hope) it’s nothing but it obviously has me concerned.

Maybe this is my new “normal” but I’m sure with anyone they had symptoms that seemed relatively innocent which turned into something worse.

We just had our first kid last year, and now that I have more responsibilities I feel compelled to get tested to ensure the worst is ruled out.
 
Please come back after you get your test to let us know how it turns out.
 
Thanks - will do. Two last questions while I wait to take the EMG -

1) I’ve noticed for the past two months I get quick facial ticks near my right jaw/chin area...they happen randomly (or if I hear a loud noise). Is this anyone else with ALS has ever experienced?

2) I can walk on my heals just fine...what do people mean when they say “can you stand on your toes too?” For example - I can stand up on the balls of my feet and walk...but I can’t stand purely on my toes. Hope that makes sense!
 
1 very common in healthy people. Not a sign of ALS

2 yes the balls of your feet is what we mean not literally on your toes like a ballet dancer in toe shoes

Now keep your promise about those being the last questions / last post before reporting on the EMG
 
Everything said here more than sufficiently answers the OP’s concerns. Great work everyone. Listen to Mike. Therapy.

Gotta add/confirm a few things on EMG’s that have been said many times but apparently never enough:

1. It is extremely rare, and I mean extremely to have a normal EMG and end up in an ALS diagnosis at any point. This is per our Doctor, one of the countrys most prominent ALS researchers and specialists.

2. No, they don’t need to do it in the symptomatic areas to see what’s going on. Active and chronic denervation and short wave abnormalities can be seen in areas with no symptoms at all if ALS exists. Meaning NO they did not do it in the “wrong places”. I know this from personal experience and medical advice to my husband.

3. EMG’s will have abnormalities that are completely unrelated to ALS. I don’t even like the term “dirty EMG” in the context of this website because it helps lead to the misunderstanding that abnormal means ALS. Talk, talk, talk to your Doctor for specifics on EMG results. We are so not Doctors here.
 
Thanks again. My EMG was actually pushed back - the person performing it was sick.

Now maybe I’m just noticing more random stuff, but I feel like I’ve been all screwy when I speak. I speak a bit fast, but recently I caught myself saying a few things weirdly.

Instead of saying “Do you think my truck can tow it” I said “Do you think my tuck and trow it.”

Instead of saying “Packed with traffic” I said “Tracked with paffic.”

Instead of saying “Did she say it” I said “Did she shay it.”

I’m not sure if these are tongue twisters or if I’m just noticing it more now...I’m not a terrible speaker but I’m also not the smoothest speaker. Just thought I’d ask.

Thanks
 
Again. Therapy.
 
John, your posts make a classic case for someone who should be considering sleep, stress, anxiety and diet/hydration/exercise, not neuromuscular disorders. You might also want to ask your doc about experimentally titrating your thyroid dose down a tick as blood levels don't always map to the clinical picture. But you don't belong here.
 
Today they did my EMG and Nerve Test.

I thought they were just doing the EMG, but the first thing they did is zap me in many places in both arms and legs. Not sure why they did this (can anyone explain) - it hurt more than the EMG!

After that, they put this needle in multiple places in my left arm and left leg. I’m pretty certain that’s the EMG.

I’m a little bummed because my right side has been twitching more than my left (the left does twitch though), so I hope it picks up everything since they only did the left side. Does that matter?

I should have my results early next week and will post them here.
 
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