30f, panicking with symptoms, uncle passed from ALS

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New member
Mar 3, 2024
Loved one DX
San Antonio
Hey everyone, thanks for having me! I watched my uncle decline and pass from ALS, and now I feel like I’m losing my sanity. Before his diagnosis, I had leftnarmmweakness and full body twitching. I got spine MRIs, two emg and NCV, and everything came back great. and eventually it went away. It’s like every two years, symptoms come back. This is the first time I’ve had symptoms again since my uncles diagnosis and passing.

Symptoms: my left arm feels weak/very quick to fatigue. I can point to it near my deltoid muscle. It is hard to wash my hair and lift my arm, but I can do it! I can still carry groceries and exercise and such. That same arm has twitching all the way down to my finger tips. Same arm, my thenar eminence is smaller than on my right hand. Now I’m having full body twitches every single day, just a quick “blip” in different spots here and there. But it’s daily. Recently continue has started twitching and I feel a pull on my lip and chin. We are military and I went to my dr, she said I passed the neuro exam and won’t give me a referral to neuro.

I’m autistic and have an obsession with medicine. I know too much. My husband is a PA and I keep asking for neuro exams and if my strength is the same. I find myself now walking on my tip toes and on my heels to make sure I can still do it. I went to urgent care and they did x rays of my shoulder and said this is all probably nerve related. I guess I’m just here seeking reassurance. I can’t find strong literature if I could have gotten the gene from my uncle or does it have to be from grandparents/parents. I just need some reassurance 😭😭
ALS symptoms don’t come and go. If you have some kind of pinched nerve in your shoulder though that could absolutely wax and wane. Like you hear people saying they have intermittent back issues that are fine and then something sets it off

Genetics. First, ALS is mostly sporadic / simplex meaning it strikes one person in a family. If your uncle did have a genetic mutation ( for which there is no evidence) he could not pass it to you. You get your genetic makeup from your parents. If your parent who is your uncle’s sibling doesn’t have an ALS mutation then it is impossible for you to have inherited one even if my uncle had one which seems unlikely.

Self testing is dangerous. You increase your anxiety and will end up with an overuse injury which will feed your fears. And badgering your husband for neuro exams will stress him and strain your marriage. Ask for pt for your arm
Thank you! The dr refused PT, ortho, neck MRI, everything. Since the first week of Feb my symptoms have been constant. I’m trying to tell myself I’m okay. Also the thread was supposed to say recently my tongue has started twitching.
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