Father diagnosed with ALS 2 years ago and now I have developed unsettlingly similar symptoms

[Triaghe]

My father has been diagnosed with ALS. Of course I am devastated for him and was a bit concerned for myself!

I took it in stride until I started to experience some symptoms personally! Now, I am beside myself with worry!

I don’t want to discus with him because he would just worry about me and he has enough on his plate!

For me it started with cramps and muscle twitching and then progressed to trouble swallowing and my tongue tiring quickly from eating or talking!

I then had two CK results a month apart, firstly at 490 then at 444.

The talking and swallowing is what really worries me because that is how my father’s ALS has presented. In fact, 2 years in, those are his only symptoms, albeit progressed to the point where he cannot talk and can barely swallow!

in fact, the pharmacy calling his wife about his medication asked if he needed any help around the house. She responded “no, but if you do I can send him over to fix just about anything”!

It really is sad to see an otherwise, strong and healthy person, afflicted in such a way!

So, back to me, 19 years his junior, I am worried sick… which, as I fully recognize, may be exacerbating and/or causing my symptoms!

I appreciate and give thanks in advance to any comments and guidance provided

 

[lgelb]

I'm sorry about your dad. Has he had genetic testing?

It would be very unusual for you to have an onset age so different from his even if his type were familial. As you say, the mind is very powerful and in all likelihood contributing to your concerns. You might want to seek out counseling because he will need you present for him.

 

[Triaghe]

Thank you very much for your response! No, he has not had genetic testing.
My sister and I feel it would be great to get him into some sort of study in case that might help.. not to mention what might be learned from him, given that he has passed every test and is in perfect health but for being completely unable to talk and struggles desperately to swallow!

In terms of age, I should have stipulated, he is 72 and I am 52.. so perhaps not too young for me to be at risk.

Would you recommend genetic testing?

 

[Nikki J]

If anyone is genetically tested it should be the diagnosed person. I am not sure what is currently available to Canadian PALS In the US genetic testing is recommended to be offered to all PALS but I think it is different there.

You of course should see your doctor who can address your concerns. It is incredibly common for family member of PALS to become concerned for themselves even when there is no prior history. 70 is fairly old for FALS

A side note is he getting a feeding tube ? Using text to speech or eyegaze?