Myasthenia Gravis News Forums Forums Welcome Lounge Meet Our New Forum Moderator – Shawna Barnes

  • Meet Our New Forum Moderator – Shawna Barnes

    Posted by shawna-barnes on October 2, 2024 at 9:03 pm

    Good day to all!

    I’m excited to be here and to help in any way I can.

    MG News Forum Moderator, Shawna Barnes.My MG journey started in 2011 when I was medically retired from the Army after I began having “weird symptoms” during a deployment to Iraq (and exposure to open burn bits and all kinds of lovely things one shouldn’t be exposed to). It took my nearly seven years of fighting and advocacy in the VA to get my diagnosis of seronegative generalized myasthenia gravis.

    I have an alphabet soup list of diagnosis’ but some of the heavy hitters are MG, PTSD, fibromyalgia, cervical dystonia, osteopenia, hypermobility disorder, seizure disorder, OAB (overactive bladder) and degenerative disc disease.

    I live in Wisconsin with my husband of 11 years, our two doggos and two cats.

    I own two businesses and help hubby run his.

    I am a no BS, tough love, goofy, sarcastic, solution oriented kinda gal.

    I’m also a columnist for MG News and have been writing a weekly column since January 2022. My column is called The Whispered Roar.

    shawna-barnes replied 2 weeks, 3 days ago 4 Members · 12 Replies
  • 12 Replies
  • David S

    Member
    October 4, 2024 at 4:27 pm

    Welcome –

    Vietnam AO – diagnosed in 2019. Currently Appealing – 2 years after my file was docketed awaiting Service Connection.

    When diagnosed I couldn’t walk around the block. These days I am averaging 3.1 miles in the mornings before it gets hot. I am fortunate to be stable and able to do some things. Can’t ride a bike and am not good in crowds – too much stimulus.

    Anyway – welcome.

    Scott

    • shawna-barnes

      Member
      October 8, 2024 at 3:40 pm

      Hey David!

      I’m pretty stable at the moment, but I’m on quite the regimen to keep me that way. I can’t ride a bike either – have you tried a hand cycle? I can do that. I’m averaging about 2100 steps a day, and working on steadily increasing it little by little.

      Thanks for the welcome! It’s great to be here.

      Shawna

  • David S

    Member
    October 8, 2024 at 4:36 pm

    The hand bike would not work for me – my issue is environmental overload not physical inability. I do get physically fatigued but I take activity when I can and rest when I can’t.

    I could ride a bike in a large parking lot, but the road side goes by too fast I lose focus and start to stammer and tremors begin. I have to hold my wife’s’ elbow when we get into crowds. I did try a recumbent but it didn’t work either. I move through life in slow motion in real time.

    I overdid my introduction to Walking (for exercise). Was averaging 3.4 miles day. Overdid and am now recovering from Achilles Tendonitis. Will start to walk again soon. Will take it a bit slower. 2 – 1 1/2 mile walks. One in the morning and one in the afternoon. Maybe I should try the bike again.

    Again – welcome.

    Scott

  • Robert Richardson

    Member
    October 9, 2024 at 3:34 pm

    Thanks for your service, and your leadership navigating this MG journey. I was diagnosed in 2016, 20 yrs after leaving a USAF career in 1996, and 25 yrs since Desert Shield/Storm deployment. So I don’t have a nexus to service connection, and was denied disability compensation in 2019, although the VA carries me on ABHOBP registry, and treats my MG.

    I’m achr + with no thymoma, my gMG symptoms are mild to moderate and pretty stable, my MG ADL score stays between 9 – 12, my current daily meds are: 6ea 30mg P-tabs and 4ea 500mg Cellcept. IVIG every 90 days.

    • shawna-barnes

      Member
      October 10, 2024 at 2:55 am

      Hey Robert!

      Thanks for the welcome. I’m glad to hear that you’re still being treated regardless of the nexus. I am seronegative and had a thymectomy in 2019. My thymus was hyperplastic, but no thymoma.

      -Shawna

  • Eric Werve

    Member
    October 17, 2024 at 7:00 pm

    Hi Shawna-

    How do I post a topic for discussion? After several years and a wide range of treatments, my wife’s employer is dropping the provider that has navigated me through this. As you might empathize, I’m freaking out at the prospect of having no access to Hytrulo or other medications for my MG. Do you have any recommendations?

    • David S

      Member
      October 17, 2024 at 7:11 pm

      Have you tried:

      https://www.healthcare.gov/see-plans/#/

      Good luck,

      • Eric Werve

        Member
        October 17, 2024 at 7:17 pm

        My wife makes too much to qualify but not enough to cover the current estimated price of $407,000 a year to continue with Vyvgart Hytrulo

    • shawna-barnes

      Member
      October 21, 2024 at 5:49 pm

      Hey Eric –

      Did you figure out how to post a question?

      If not, you can try this:

      While logged in, go to “forums” in the menu at the top of the screen.

      Look at the various categories, I believe the “healthcare and treatments one” would be relevant. Click on the text, as that is the link to open the forum category to see what’s been shared/posted.

      Once you’re in that particular topic, in the right hand menu is a button that says “new discussion”. Click on that and you can post your question. <3 Please let me know if you need any other help on that front.

      Shawna

  • Robert Richardson

    Member
    October 18, 2024 at 10:50 am

    Although I have not pursued vyvgart/hytrulo, I’ve been successful with asking for “patient assistance plans” offered by manufacturers and suppliers, and some pharmacies, of specialty meds, that cover patient costs and copays. Be proactive and ask, complete the paperwork.

    In addition, NORD (National Organization of Rare Diseases) is a large resource for assistance.

    • Eric Werve

      Member
      October 18, 2024 at 2:22 pm

      I’ve looked into several “assistance” programs, sadly, with the same result. I will followup on the NORD recommendation. Thanks

    • shawna-barnes

      Member
      October 21, 2024 at 5:49 pm

      Thanks for chiming in and helping Eric, Robert! I appreciate it!

      Shawna

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