Tongue fasciculations and tremors

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Tejcurrent

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Joined
Mar 10, 2022
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Reason
Learn about ALS
Diagnosis
00/0000
Country
US
State
SC
City
Myrtle Beach
Thank you to everyone who is a member of this forum. My heart goes out to you, and I appreciate your kindness to provide any input. I am a 36 year old male with glaucoma, but otherwise no previous health issues.

About 9-10 months ago I started noticing body wide tremors. They started in my torso, which I noticed as I tried to do a normal exercise. Over a month or so they spread to my entire body. My legs feel like they're trembling, and it often wakes me up. My hands, neck, everything trembles like when you're experiencing muscle failure. It isn't very visible, but feels much stronger than it looks.
I went to the ER initially, and the DR told me he thought I had ALS and to see a neurologist.

I went to a local neurologist in August, and had many visits for xray, mri, emg, etc. He did not test my tongue, but did notice some issues on my emg that he described as probably a pinched nerve in my lower back. He didn't see lesions or denervation. He has done some blood work, but super basic.

I hadn't looked in the mirror, but my tongue feels like when you burn it on hot coffee. I looked in the mirror a month ago and noticed fasciculations through my entire tongue, both when at rest and when extended. My tremors are 24/7, and while my speach is clear, my tongue does not sit still. When I stick out my tongue it isn't centered, it does go to one side slightly.

I've been more clumsy since the tremors started, and during exercises noticed I can balance on one heel, but absolutely can't even stand on the other. Its like I just can't get it to even try to lift like the other.

The doctor I saw has a 2 star rating, and said he didn't see anything of concern in any of the testing. He strongly recommended I get another opinion, and even scheduled the referral for me. The soonest available time is October, so I have a long time before I can get another set of eyes on my symptoms and testing.

My tremors have gotten a little worse, but my tongue is feeling worse quickly, and the fact it's starting to angle to one side has me worried. The referral was for MND, but I'm wondering if he just sent me elsewhere to see what 6 months would turn up for another doctor.

I am doing everything I can to spend quality time with my family right now, but my fear is dominating much of my thoughts. Do my symptoms sound like MND? Any input is so greatly appreciated. Thank you!
 
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