Gastro intestinal issues. For nearly my entire life, I would get terrible stomach aches. I eat like a bird, so it wasn't from over indulging. I went to so many specialist, was told repeatedly it was 'all in my head', took supplements, probiotics, changed diet numerous times...spend forever in the bathroom. It was only after coming across a tiny article ...probably on here...that I ever saw any mention of it being an effect of SMA. Not a single doctor of the myriad of doctors ever mentioned this as a possibility and it is something family members don't understand as it doesn't seem directly related to muscle weakness. Is impossible to explain to people too.

I think the hardest part for me is being able to do something normal to go. You can’t do something or it’s very difficult and people look at you strange.

I agree with Eric - gastro-intestinal issues from an early age. Lots of tests, barium meals etc. but nothing wrong with me! Certainly, doctors saw no link between muscle weakness and stomach upsets! Have been much better believe it or not, since being on Evrysdi!! Long may it continue! Even better when Evrysdi reportedly is coming as a tablet.

The slow progression of the disease. So slow you don’t realize that you are losing muscle strength until one day no matter how many times you try you can no longer do that thing you used to be able to do that was difficult.

Definitely fatigue, up to diagnosis I was well aware of withered thigh muscle and got used to it along with falling sporadically but the fatigue is all encompassing and only combat with diet, extreme rest and positives