Concerned - Seeing Doctors, Going Through Process - Looking for reassurance or if I should be concerned

[freezyreeze]

A few weeks ago I started having tongue fasciculations on the right side of my tongue that occasionally affect my speech and eating. They are constant but occasionally will "twitch" worse which is when I have the difficulty talking, etc. The worse twitching (it's almost crampy) seems to happen more when I'm tired or stressed. The constant twitching has spread more to the center of my tongue now.

I went to a doctor who observed the constant fasciculations and said she'd never seen that before. When testing my reflexes, she noted hyperreflexia without clonus (3+) on my right side only in the bicep and patella area. She referred me for an EEG. the EEG showed no seizure activity and appeared normal. She has referred me for an MRI with and without contrast and a nuero consult. I am still waiting for Nuero to contact me to set up an appointment. I did ask the doctor to send a nuero filament light chain blood test to the lab just so I can rule out anything nuero degenerative, but haven't heard back yet.

I of course googled my symptoms and clinical findings with much regret, as ALS was the first thing that came up, and I'm hoping someone can either give me reassurance or tell me if I really should be as concerned as I am.
Thank you!

 

[lgelb]

ALS onset in the tongue, arm, and knee would be very unusual. Be aware that an NFL test neither confirms nor rules out neurodegenerative conditions. My advice as you await the neuro appointment, which you can call them to schedule if a referral has been made, is stop googling and keep living. And take a look (perhaps using a wearable and/or video) your quantity and quality of sleep, which can significantly influence the issues that you describe.