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Biggest challenges you face in your current journey?

Hi- I'm just curious about how people navigate this journey well. What are your biggest challanges and support needs? Where do people go to get support? What actually makes a difference?

  1. How everything is a knock down drag out fight. With doctor's, office staff, nurses, hospitals and insurance. I never even heard of my first diagnosis of MG. I went into the hospital thinking I was having a stroke. Right off the bat it was Myasthenia Gravis. So 10 days later I got home and it was like ok. What now? First appointment couldn't get in for almost 6 months. Guess what? Back to the hospital. So when I got out after IVIG appointment the next day. Then nurses not making referrals to other doctors or calling in prescriptions. Referring to doctor for thymus removal I'm just so tired of fighting.

    1. Hi ,
      Thank you for sharing.
      My first reaction... your name here seems fitting to the description of the frustrations those of us with rare diseases often face!

      It also reflected for me the angst I often feel in needing to direct my own care... especially the need to double check what some providers say they do in terms of be sure it actually gets/got done.

      Hang in there!

      Gina Miller Team Member

  2. One minute at a time. With a big smile on my face. 🤗

    1. Ty for your sweet reply 😀

    2. _/I\_ Gina

  3. My biggest challenge has changed over the 4 years since my diagnosis of Myasthenia Gravis. I already had Rheumatoid Arthritis and right before Covid, my doctor literally disappeared. Closed his doors and no contact, notice, nothing. So as I was starting to experience a flare, I contracted Covid, then I had a MG crisis. But didn't know that's what it was. Getting a diagnosis was the first challenge, getting over Covid and the crisis was the next, and its been one challenge after another. But one that has been constant is battling the depression that I already had to battle, except now, there is another 10lbs added to it. My biggest help has been a friend who has several health issues and has gone through the battle of getting diagnosed, having to leave work, fighting depression, disability challenge, getting the right meds, etc. She has guided me, encouraged me, prayed with and for me, cried with and for me and pulled me out of my pity parties more than once. I am still struggling and thankful I have her and God. Because, I still haven't figured out the best route to handling the challenges. My prayers for anyone with a rare disease, God be with you.

    1. Hi,

      Thank you for sharing about your journey since receiving that additional diagnosis of Myasthenia Gravis, I also have had bad COVID, and know how difficult it can be to travel that road while also dealing with serious illness. I am so glad that you were to find some strength through both a dear friend, and your faith in God.

      Wishing you continued knowledge in discovering the best ways for you to handle the ongoing challenges. Perhaps others' replies here might contain some helpful insight to help you along the journey ahead.

      Blessings and Hugs,
      Gina Miller
      Team Member

  4. Finding a doctor. I have Arthogryposis Multiplex Congenital Distal Feldman -Hall with Dupuytrens Contractures. I'm 76 years old. Treatment is done as the child grows. Once the child becomes an older teen or adult, treatment ends as it is felt the bones can no longer be manipulated to aid the child. So when we start breaking down with excessive wear and tear or arthritis we have no doctors with the knowledge on how to treat us. People age 50 and above are the first generation that was no automatically institutionalized. And our operations are no longer performed. Very few of us have hospital or doctor records.

    1. Dear
      Thank you so much for sharing about your healthcare journey with your rare disease. The lack of records for older people is an issue that I imagine many younger people haven't thought of.
      'm sorry that it's been big challenge for you. At 66 now, and upon reflection, I know that it's been a challenge for me, too...

      I am not sure from your additional share if you are happy about not being automatically institutionalized...would you like to share more about this? Also, about 'the operations' no longer being performed...are their different treatments to help you instead?

      Hugs to you,
      Gina Miller
      Team Member

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