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@joane

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    joan replied to the topic No Change is a Good Thing in the forum SMA Treatments: Questions, Stories, etc. 6 months, 3 weeks ago

    Thank you DeAnn…  I will definitely let you know what I decide..  I have a virtual appointment with my neurologist the first week of January..

    Joan

    Stockton NJ

     

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    joan replied to the topic No Change is a Good Thing in the forum SMA Treatments: Questions, Stories, etc. 6 months, 3 weeks ago

    Good afternoon every one,  I had been on spinraza for a couple of years and felt good and even a little stronger!  I then switched to evrysdi since it sounded great, so easy compared to the spinraza procedure….I now feel much weaker and may go back on spinraza, not sure and very confusing.  I also wonder if I went back to spinraza if I would ga…[Read more]

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    joan replied to the topic Stomach Issues on Evrysdi in the forum Adults ​With​ ​SMA 1 year, 4 months ago

    Good afternoon everyone. I have just started to have diarrhea problems and noticeable weakness in my arms.I was on spinraza for about 4 years and I wish I had stayed on it even though it is a pain to get to the hospital,whole procedure during the day but was grateful for it I went on Evrysdi the beginning of November and just started to have these…[Read more]

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    joan became a registered member 1 year, 4 months ago

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