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This topic has 6 replies, 4 voices, and was last updated 1 month, 2 weeks ago by DeAnn R.

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    • #25423
      Brianna Albers
      Keymaster

      Happy December! My latest column is about disease progression. I often feel like my SMA is getting worse, only to realize it’s just menstrual fatigue. Still freaks me out every time, though!

      How do you cope with SMA progression?

    • #25443
      Alyssa Silva
      Keymaster

      Hey! I totally resonate with this as I used to experience severe menstrual fatigue before and during my periods. They were pretty regular, too, so I only ever had a small window of days where I was just experiencing normal SMA fatigue and not both. It SUCKED.

      Have you considered going on birth control to stop your periods? I started the pill 5ish years ago and I don’t regret it. Of course everyone responds differently to it. But I would say it’s at least something to consider!

    • #25446
      Emma
      Participant

      Hey!
      <p class=”p1″><span class=”s1″>Same as Alyssa! I’m on the pill since 1 year and oh wow does it change life ! I had to try a few different ones to find the good one but how cool it is to not have PMS or uterus cramps or add more logistics to get changed often. I would get so tired and weak too. I think I talked about it here but I would also catch colds more often when i was on my periods, so weird but the timing always coincidated. Also my hair got greasy way less fast since on the pill and that’s great when you don’t have the spoons to wash it every 2 days.</span></p>
      <p class=”p2″><span class=”s1″>Incredible how hormones have so much power on our body (and mind) !</span></p>

    • #25465
      DeAnn R
      Keymaster

      In this day & age there’s no reason you have to deal with your period.  I’ve been on contraceptives for years just for that reason.  Not having your period is liberating.  I would suggest talking with your pcp about it.

      I wouldn’t let up on the neurologist either.  Now that you have your genetic test results there shouldn’t be any reason they can’t get going on it.  Do you at least have an appointment?  If not I’d be calling or messaging daily.  Do you use MyChart?  I’ve found clinics to be more receptive using that communication for some reason.  Now that you’ve had an initial visit I don’t know why they couldn’t do a video visit to prescribe Everysdi.  Here’s a link you may be interested in:  https://www.genentech-access.com/hcp/brands/evrysdi/forms-and-documents.html?c=ris-173d96c44d9  I’m in the process of filling out the start form (the second on the list) to get assigned a PAL (Partnership and Access Liaison) to help with the process.

      As far as disease progression though it can be disheartening.  Thinking back sometimes I’m in awe of what I could do just 5 years ago.  I can’t dwell on it too much though.  For me illness really drains me.  It seems like I never bounce back 100% after a serious illness.

      • #25516
        Brianna Albers
        Keymaster

        I actually just had my appointment today! You see Dr. Karachunski, right?

        • #25522
          DeAnn R
          Keymaster

          Yes, I see Dr. Karachunski.  Is that who you saw?  My televisit was the day before Thanksgiving.  I just got a letter that my insurance approved Everysdi, now waiting on the pharmacy!  Hope it goes just as quick for you.

    • #25515
      Brianna Albers
      Keymaster

      Wow, thanks for mentioning birth control, y’all! I considered going on it to help with acne but decided to try Accutane instead. I’m going to talk to my PCP about it!

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