40F Fasciculations after dad diagnosed with ALS

[ari3027]

Dear ALS Forum community,
My father was diagnosed with bulbar onset ALS at the age of 68 and sadly passed away 1.5 years after. It was a very traumatic time for me and my family and it is still difficult to move on as I was very close with my dad and taking care of him full time.

I am now 40 years old and generally feel healthy. For about a month I have been having occasional muscle cramping and stiffness in right leg and right arm. For a bit over 2 weeks I have daily fasciculations on both legs/feet and occasionally arms.

Now I am worried that these could be ALS symptoms. There were no known cases of ALS in my dads family - not in the two generations (his grandparents and parents, aunts and uncles) before, not in his generation (his brothers and cousins) or the generation after either (none of my cousins or siblings) his . Knowing the difficult journey of diagnosis for my dad (many months of misdiagnosis) I am considering genetic testing.

Is familial ALS likely if there are no known cases in the family? Has anyone done genetic testing and can share about their experiences?

 

[Nikki J]

No it isn’t likely. It is also unlikely if it were to manifest 28 years younger.

I tested asymptomatically but my case is different than yours. My family is FALS with multiple relatives and an identified genetic mutation.

If you have symptoms that worry you go see a doctor. Genetic testing even if positive does not diagnose you. It doesn’t even factor into the current diagnostic criteria If you had a megative test would you just forget about your symptoms

A positive genetic test opens one to genetic discrimination in all insurances except medical insurances. There have been incidents of housing discrimination too. It is not to be undertaken lightly and even FALS family members choose not to know.

 

[ari3027]

Thanks so much for your kind response Nikki - o remember you gave me helpful advice when my dad was diagnosed too!

Unfortunately, I have had some more symptoms like muscle shrinking which the neuroligist noticed (although it’s in a leg I had a meniscus tear in) in right leg and stabbing pains in addition to the fasciculations - my reflexes were all normal though so i am getting an EMG today.

Obviously this is all very traumatic after what I have been through with my dad. I still go through so much pain and memories every single day. I just don’t know how to move on from it. Does one ever move on from losing someone one loves in such a horrific way? There are too many images of the desperation and pain my dad was going through especially in the end phase.

Now all of these painful memories have turned into anxiety, health anxiety has got the best of me. I even had a dream where my dad called me and I heard his voice after so many years which was so emotional (he had bulbar onset ALS) and he asked me “are you coming?”.

I am obviously seeing a therapist to try to deal with this especially as I have a one year old which makes me even more anxious as I just want to be able to be there for my son

I know people on this forum are probably going through much worse so I feel bad for even posting here - sorry if it comes across as insensitive.

I do have a question regarding the EMG - if someone gets a clean EMG does it mean ALS can be excluded ? I’ve read about people redoing theirs after some time…

 

[lgelb]

A clean EMG and symptoms as you describe leave no concern for ALS. People you read about have more concerning symptoms from the jump.