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Real members of mySMAteam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.

Which SMA Symptom Surprised You The Most?

A mySMAteam Member asked a question 💭
San Francisco, CA
August 19, 2024
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A mySMAteam Member

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.

August 20, 2024
A mySMAteam Member

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.

December 21, 2024
A mySMAteam Member

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.

November 24, 2024
A mySMAteam Member

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.

October 7, 2024
A mySMAteam Member

Walking, or being able to walk without support

August 19, 2024

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