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New member
Apr 2, 2019
Hi Everyone,

My husband is 35 years old and has lost a cousin, an aunt, 2 uncles, (all to ALS) and currently watches his mom battle the final stages of ALS. His family carries the c9 gene.

Upon visiting with his mom over Christmas (they live out of state) and spending a week surrounded by ALS (and also having some scary conversations about ALS with his sister) we came home and the very next day my husband started getting twitches. He originally had about 75% in his legs, the other 25% all over.

Now, 3 months later, they are less frequent in his legs but still happen throughout the day all over, including a pulsing twitch in his right hand. He has sought treatment for anxiety (as we hope and pray that's what's bringing this on) and are currently undergoing genetic testing to find out if he carries the gene before taking further steps.

He's currently fixated over a burning sensation in his right thenar muscle (muscle under thumb on hand) that he feels when he grips dumbbells, scissors, shakes protein shakes, etc... (he's a serious weight lifter). His ability to hold 80 lb dumbbells for lunges is unaffected; however, he does feel like the burning is causing his grip to weaken - he's worried that there is weakening taking place there putting strain on other muscles that are overcompensating.

I have been consistently reassuring him that if his thenar muscle was experiencing ALS weakening, it would not be able to hold 80 lb dumbbells for a full set and carry on the rest of his workouts as he usually does. His overall strength is not affected at all after 3 months of twitching.

He's doing all the right things to treat this from an anxiety standpoint (taking medication, seeing a therapist, meditating, drinking green tea, essential oils, you name it...) and I'm doing my best to be reassuring with what I google (he's agreed that he won't search anything this whole time) but I was looking for a little reassurance that I'm not just giving him false comfort. Would muscles that are burning when used but not losing any function be symptomatic of early ALS?

Thank you all for the support you offer here. We have seen ALS at it's very worst and are just praying that even if we find out he carries the gene, his age buys him enough time for a treatment. c9 people who follow the research know they are SO close! Maybe just years away from an effective gene blocker on the market!
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You are correct this does not sound like ALS onset.

You are also correct that treatment seems very close. If he turns out to be carrier he can help by participating in genetic studies. The plan , once something works for symptomatic c9, is to trial it for prevention. They need biomarkers found in asymptomatic carriers to do this. 35 is very young for c9 onset ( not impossible but unlikely)

There was a preliminary report at the last MNDA conference that vigorous daily exercise for an hour or more daily looks like a trigger in c9 carriers. I say this so that he can take that into account if he is positive

I edited your title slightly to reflect the fact that he does not know if he is a carrier.
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Thanks for your reply, Nikki.

We're aware of the recent findings about vigorous daily exercise and he's scaled back but at this point is also using it as a daily strength test to keep his anxiety in check by knowing he's not lost strength. He makes sure to take frequent rest between sets and does not do any high intensity interval training with a sustained elevated heart rate.

He does participate once a year in a genetic study done at Penn. His other sister did as well until, thank God, found out she was not a carrier.
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