Old 02-28-2016, 02:26 PM #1 (permalink)
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Default My son only 19, So worried

My late husband passed away in 2007 at age 52. His father also had "probably als" and passed away in his fifties, so we are assuming it was familial ALS, although his father's diagnoses wasn't definite.
My son is a college student, age 19, and under a great deal of stress. He recently began working out and eating a ketogenic diet. He said though, about two weeks before his keto diet, he started noticing both of his pinkie fingers tingling, much like they were asleep and just waking up. This would be during the day.
Then at night, his hands would jerk and wake him. Since then, (about 6 weeks) he has also been woken up (only happening at night) by sudden jerks in his body, either in his feet, thighs, face, or hands and cannot seem to sleep.

He had blood drawn last week, and all was normal except it showed he had had mono at some point, which we were unaware of.

Of course, as a Mom I am very worried, and as a son who could have FALS he is just as worried. His primary dr. seemed to think it was stress related and blew off the early onset of anything, saying it would be so rare.

I just want to get into a neuro, but wondered if anyone could read my post, and give me another opinion. I have convinced him to come off the Ketogynic diet for a while and to slow down on his workouts. Hoping this is causing the jerking movements at night. I also put him on magnesium supplements, along with valerian tea and melatonin to help him sleep. They haven't helped much thus far though.

Thanks for reading
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Old 02-28-2016, 02:46 PM #2 (permalink)
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Default Re: My son only 19, So worried

Hi sorry for your worry.

The likelihood of being a FALS family is very difficult of course.

I do not think your son's symptoms sound like early ALS, for what that is worth.

Also if both known ALS cases died in their 50s it is really unlikely that your son would have onset at 19. There are young onset forms of FALS but your husband and father in law do not fit that pattern. There is certainly some variability in onset age in FALS families but this is big gap.

Having said that a visit to a neuro might reassure both of you and also give your son some confidence for the future. It is not an easy thing to live with- the possibility of FALS- but there are treatments and cures coming , especially for FALS subtypes where we are coming to know more exactly what the problem is. I have faith that the next generation will not have to die from this

Last edited by Nikki J : 02-28-2016 at 05:02 PM
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Old 02-28-2016, 04:57 PM #3 (permalink)
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Default Re: My son only 19, So worried

Hi Dlynn.

I agree with your son's doctor. Those symptoms are no reason to believe ALS is starting.

And Nikki is our foremost authority on FALS. Believe her.

At most, you might want to work with your doctors to discover the cause of those unexplained movements. But frankly, it reminds me of college stress that will go away on its own.
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Old 02-28-2016, 10:40 PM #4 (permalink)
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Default Re: My son only 19, So worried

Thank you! We are going to try to get into to see a neuro to see what is going on - but I do have to think that it's just stress related as well, and will go away with time on its own.
Of course, it's all is complicated and possibly making it worse just having the anxiety of knowing he could have it someday..
But your post gave me reassurance as to what I was thinking too, on the early onset compared to their ages, so thank you.
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Old 02-29-2016, 11:56 AM #5 (permalink)
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Default Re: My son only 19, So worried

Hi DLynn. I agree with Nikki and Mike, ALS seems like the last thing on the list today. May I offer another possibility? When I was a much younger man I knew a guy who started seriously working out. His workouts left him fatigued and I think he may have injured his shoulders, or at least pulled something badly. Whatever it was, it changed the way he slept because he could no longer get his shoulders comfortable. He would put his arm up over his head in order to sleep. One day he woke with his wrist and some of his fingers numb and tingly. Scared him to death, but it eventually went away as his shoulders healed up and he went back to sleeping with his arms down. Just maybe your son is having something similar? Hope so, for all your sakes!
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Old 02-29-2016, 11:39 PM #6 (permalink)
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Default Re: My son only 19, So worried

That's a possiblity - he has definitely been working out more to build muscle when all of this started. I am sure hoping, thank you!
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Old 03-08-2016, 11:06 AM #7 (permalink)
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Default Re: My son only 19, So worried

My brother had cancer a few years ago, so when he started experiencing symptoms similar to your son's, we feared a recurrence. He also developed symptoms after embarking on a workout/fitness regimen. Thankfully, we found out the bilateral numbness & random twitching in his fingers/hands was a direct result of lifting weights & over exertion. He was also awoken by jerking & found his symptoms severely compromised his sleep.
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