33 male nervous about ALS

[Jake33]

Hi everyone,

One month ago I started having twitches pretty much all over my body (a lot in my right index) Then I started feeling weak, like my legs would start shaking when I would try to pick up something (lower back is stiff). Soon after I started noticing bad coordination with my right hand with tremors. Now when I do push-ups I shake a lot. I went to my physio and he said I might have a little bit of hyperreflexia in both legs but nothing in the arms. Last week, my right bicep started twitching for 2 days non stop (like not on and off just non stop) and now my left index is twitching often. my wife is 7 months pregnant and now I’m only thinking about ALS thinking I won’t be there for my baby. I am testing my strength everyday and I feels kind of normal. I can’t eat, can’t sleep and it’s consuming me. I became so irritable with everyone (which obviously I also think is caused by ALS) and sometimes I feel like I can’t breath properly.
GP is sending me to a neurologist but the wait is killing me. I asked him what else he could be and he said nothing comes to mind. Could this be caused by anxiety or should I still be concerned by ALS ? Thank you very much !

 

[lgelb]

Hi Jake,

I don't see any reason to worry about ALS. Tremors and twitches, which may have no clear cause, can affect coordination, but the pattern you've described points well away. Sounds like you and your physio might have more work to do on the stretching aspects of your regimen, along with maybe massage, a hot tub and the like. You might hold off on the repetitive motions that are bouncy, like pushups, while you work on elongating your muscles.

I am guessing that with the pregnancy (congratulations on the forthcoming arrival) and pandemic, this is a stressful time and some counseling, however brief and virtual, might be of benefit as well. Nutrition, sleep and hydration are all worth considering as well, as you will want to be at your best when your baby is born.

Best,
Laurie

 

[Jake33]

Thank you so much for your kind words Laurie. I will still get my EMG done to get this off my mind and yes I think this baby coming has given me health anxiety. Where should I be donating to support ALS research ?

 

[lgelb]

Very kind of you to ask. If you have a local university or medical center that you support, you can earmark funds for ALS research, or you could consider the ALS Society of Canada.

Please stop back by when you have an EMG report -- it does help others in a similar boat.

 

[Jake33]

Please read this update if you are worried about your ALS symptoms. I had many as you can read above and a lot more that I didn’t mention that I thought were all pointing towards ALS (I was 100% convinced I had it). Had my EMG today and was diagnosed with benign fasciculations syndrom which is a lot more common vs ALS and is caused by stress and anxiety. I know it’s hard when you think you have ALS but please think about the fact that others like me were convinced too and ended up having close to nothing. If you have no clinical weakness it’s not ALS (even if you do it’s not necessarily ALS). The reason you are so afraid is because there is currently no cure/treatment for it. So why don’t you take this (unfortunate) opportunity to make a donation to ALS research so we can help this world find a cure ASAP (like seriously do it right now)

thanks (special thanks to Laurie) to this forum who is supporting not only people with ALS but the many many people who think they have it. You are making a big difference for a lot of people. My thoughts are with everyone who is dealing with this terrible disease including their friends and family.