Tongue issue and muscle twitches. ALS or anxiety

[Robetl]

Hi I’m here because my mother was diagnosed in January 2025 with bulbar ALS. She also has a gene anxa11. Not sure if any previous family had it. They did not live long. She is 77 years old and it just showed up. Now the whole family is afraid of having the gene but no one has tested for it. My current situation is my sister and I are caregiver to mom. This has been so sad and so stressful. Now I’m worried I have ALS. I have muscle twitches all over my body. Sometimes in calves, bicep, back, shoulder. I also feel like sometimes I accidentally bite my tongue when I say certain words. My tongue feels big. I get a strange metallic taste this has been persistent for 6 months with a month of going away. Am more stressed than I have ever been. Have had health anxiety all my life. But I can’t stop thinking about it and fearing it. Actually terrified of it and currently watching it rip out my heart as mom declines and becomes unrecognizable.

 

[Nikki J]

I am sorry about your mother. I lost my mother ( and other relatives) to c9 ALS so I know how excruciating it is. It is common for relatives even without genetic ALS in the picture to develop “ symptoms” and to worry Anxiety and stress alone can certainly bring on everything you experience

You should have been told anxa11 is a late onset mutation. Generally mid60s to 70s. If your mom is 77 I do not think you can be mid60s.

What you should do is go to the doctor and get checked and then consider participating in the PREVENT ALS study for carriers/ potential carriers. You can do this without finding out your genetic status. Wash U is one of the sites. Does your mother go there? Since anxa11 is quite recently discovered I am sure they would be extra excited to see your family. ( it is for carriers and first degree relatives of carriers/ genetic PALS )