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workingonit

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Valley Stream
Hi All. Been lurking here for a while. Originally was reassured by what I read but as my symptoms have progressed, less so. This is somewhat unavoidably long; if you can stick with me, so much appreciated.

Off that bat I'll say this: I am a 24-year-old female. I have seen 2 neurologists, ENT, eye doctor, cardiologist, PCP. I had an NCV that showed abnormality in left lower arm, a clean EMG of all four limbs, clean brain MRI, cervical MRI with some insignificant abnormalities, normal SEP of upper and lower left side, normal EEG, normal EKG.

I am scheduled to see an infectious diseases doctor in about 2 weeks and a neurologist at Columbia in about a month, but my fear over the issue has driven me to post here in the interim.

Symptoms go something like this: all started about 4 months ago when I was having mostly sensory stuff all over, but most notably tingling in pinky/ring finger on left side. One day, that left arm "dropped," where I felt a weakness and a mild lack of coordination. Eventually that was diagnosed as damaged ulnar nerve. Coordination returned but weakness has been fairly persistent - better than when it first "hit," but just not 100%.

The only other significant symptom that remains from that period is very occasional drooling, like when bending over. While I rarely drool now (because I am more careful), I have noticed a definite uptick in saliva output.

About a month after the arm weakness, I began to feel a very small twitch in a toe on my left foot. That then progressed to the toe next to it and up the calf with larger twitches, at which point my left lower leg began to feel off. Twitches have occurred in the right calf as well since but much less frequent. Twitches felt relatively constant for a while but now I can go for what seems like a decent amount of time without them, maybe a day or two (maybe).

Till this day I cannot quite pinpoint where the leg issue stems from, but my balance has gotten worse and it seems like to support myself on that leg I tend to fall on the insole of that foot more. When I dance, if I hit the wrong angle it my ankle/knee feels like it's going to give out (only actually happened a couple of times, and when just walking).

That said, I can still walk on heels and toes, stairs and all that, even if that side feels a bit more challenging. I can complete any "test." No clinical weakness in any limbs (don't know about bulbar).

I then noticed atrophy in my left forearm. While I could not prove this, recently my rings have become much looser - to the point that my engagement ring flew off one day. So the atrophy now seems objective.

I've been dropping things a lot, especially from my left hand.

My vision has deteriorated, but that seems to be mostly remedied by the new glasses prescription.

What's concerned me most is the bulbar stuff. For the past few weeks it feels as though when I drink water, it's going up my nose. Certain gummier foods, like a tuna bagel, take a double swallow to get down every last morsel. My tongue also appears to be drifting to the left when at rest in my mouth. I feel twitching here too.

My head seems to be cocking a bit to the left side at rest now.

I cannot complete my yawns.

I get episodes where I have trouble breathing. It used to be apparently anxiety-related but they've become more frequent - although not constant and I can still work out.

My energy level has somewhat diminished.

I get tremors when holding certain limbs in certain positions on the left side.

And finally, the last symptom which no doctor seems to have even heard of - when I type, or sometimes when I write, my hands will suddenly jerk out. Feels like I have a bit of a shock when they do that. What's in an odd way reassuring is that this happened to me once or twice in years prior. But now it happens extremely frequently. Worse when tired.

Final note: this all began during a time of high stress, lack of sleep, poor diet. But all those things have been mostly remedied and the symptoms continue to progress.

Any and all thoughts appreciated. Thank you so much.
 
Read all the stickies! It's not ALS.
 
Thank you so much for reading and your reply! Yes, I've read the sticky. I understand that what it says there indicates that I do not have ALS. And I did do a dance on the sofa with my husband after reading your reply :).

However, I've read enough personal account to see that the "rules" laid out in the sticky are often - not just rarely, it seems - not the case. This site seems to be replete with people whose EMGs were clean, for example. Or people that had sensory issues. Just today I read from someone that one of her initial symptoms was increase in saliva - not late stage.

Hence, my worry.
 
Yeah. No. I didn't read anything about ALS in your post.

Worry if you like about other people with clean EMGs. But first, show me anyone with ALS that had a clean EMG. You might be reading any of a thousand posters who SAY they have ALS with a clean EMG, but it just can't happen. That's like having a totally smashed and crushed leg, with a clean and normal X-ray. Ain't gonna happen. Widespread bilateral upper and lower paralysis shows up on an EMG very early.

No sticky perfectly communicates something as complex as ALS, but we on the board know ALS fairly well. You don't have it. Don't know what you have. We're unable to diagnose something other than ALS.
 
Well -- Several of us have tried to share our experience with you and your fears.

The consensus seems to be that you need to resolve your issues with medical professionals and/or do not have ALS.

We do empathize with your fears, but there is no more we can help you with at this time.

This note is not to deter you from your investigations, but just not on this forum.

You asked, we answered, so please move on.

If you think you have a motor neuron issue, see your Primary Care Provider and get a referral to a motor neuron qualified neuro, note: most are NOT ALS/MND (Motor Neuron Disease) experienced!

Anxiety can be a real problem that can endanger your physical health. Make sure you tell your medical practioner what you are feeling as well as how you are feeling.

No need to reply. Goodbye and best regards.


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Max
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onset 9/2010, diagnosed with ALS by Stanley Appel 8/29/2013
It Is What It Is ...
 
Thank you both for your feedback.

Atsugi - your input on EMGs is particularly helpful to me.

Despite whatever clean bills my doctors have given me, the reassurance from people on this board regarding ALS specifically has been even more meaningful.

Thank you all for your time. Best wishes.
 
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