Myasthenia Gravis News Forums Forums Welcome Lounge Hello and Welcome From One of the Moderators!

  • Hello and Welcome From One of the Moderators!

    Posted by bns-staff on May 11, 2021 at 7:30 pm

    Hello! My name is Michelle Gonzaba (she/her) and I am a forum moderator for Myasthenia Gravis News. I also write a weekly column discussing my life experiences with MG. Currently, I am a secondary English teacher living in Texas. Some of my hobbies include reading, obsessing over pop culture, and judging movies I have never seen.

    I first experienced symptoms of MG in 2010 and was finally diagnosed a year later. Although I have had a few flare-ups, I am extremely happy to say I’ve been in remission for five years. I am excited to work with my fellow moderator, Jodi, and help build a community where those with MG can find solace, support, and information.

    jonathan-a replied 2 years, 1 month ago 4 Members · 4 Replies
  • 4 Replies
  • michele-ayers

    Member
    February 2, 2022 at 4:00 pm

    Thank you Michelle! I am so glad you have this forum/site and I am happy to hear you are in remission. I ( she/her) was recently diagnosed and look forward to gaining from your knowledge and personal experiences. My first signs have been ocular and I am on prednisone and mestinon. Do you know anyone who has tried the newest fda approved medication? I am very nervous about losing my voice as I am a singer ( retired teacher) and I’m trying to record and perform as much as I can before I lose it. Thank you for welcoming me to this site. I am very appreciative. Michele

  • Deleted User

    Deleted User
    February 3, 2022 at 10:14 am

    GoodMorning,
    sometimes it’s not easy. Plasmapheresis had to be cancelled last Friday. One of my ports developed a blockage. The machine was pumping only 1 liter an hour.
    The port is being changed on February 18. Oh well
    I’m supposed to start with a new neurologist. Let’s see.
    My swallowing is becoming worse, even saliva has sometimes become difficult to swallow.
    My general strength has lessened but my moving about has improved.
    Mg is a cantankerous disease,
    Just recently a TV commercial says there’s help and hope.
    We’re rare oeople us Mg sufferers. So few of the US are patients og Myasthenia Gravis
    It’s many years on my calendar, I pray that things are found to help one day at a time
    Stanley Schildkraut

  • Deleted User

    Deleted User
    February 3, 2022 at 10:15 am

    GoodMorning,
    sometimes it’s not easy. Plasmapheresis had to be cancelled last Friday. One of my ports developed a blockage. The machine was pumping only 1 liter an hour.
    The port is being changed on February 18. Oh well
    I’m supposed to start with a new neurologist. Let’s see.
    My swallowing is becoming worse, even saliva has sometimes become difficult to swallow.
    My general strength has lessened but my moving about has improved.
    Mg is a cantankerous disease,
    Just recently a TV commercial says there’s help and hope.
    We’re rare oeople us Mg sufferers. So few of the US are patients og Myasthenia Gravis
    It’s many years on my calendar, I pray that things are found to help one day at a time
    Stanley Schildkraut

  • jonathan-a

    Member
    February 18, 2022 at 9:43 pm

    This is a question that I have had for a while.   I have a name for my disease now, after 8 months of being undiagnosed BY EVERY DOCTOR WHO SAW ME, then  a hospital nurse finally recognized my symptoms and got me treated, tested, IVIGed, and on MG drugs.

    So I have been constantly googling,  now that I found my disease name.  ACUTE OCULAR and GENERAIZED MYASTHENIA GRAVIS.   I have replied to some of your questions.  Is there a way to submit a new question?   It has taken me over 11 months now to finally start getting my hospital reports and tests results, from ALLSTRIPES and PICNIC HEALTH RARE DISEASE research groups.  The papers, that they have gotten on my behalf,  are a real eye opener. But how do I get my TEST RESULTS translated into layman ENGLISH.  They found my ANTIBODIES TESTS.

    BINDING    is 8.7,  8.1, and 3.5 nmol/L  (high)

    BLOCKING    is 59 % (high)

    MODULATING  ANTIBIOTICS   is 81%  (high)

    I have been trying to find a website, that lists and explains the scores in layman ENGLISH,  and the “reference ranges list” with my scores, seems to say that I am DEEP into Myasthenia Gravis territory.    But HOW deep ?  I was diagnosed on 3-24-2020, and I am in remission again now, after my toasted immune system could not protect my left arm from SEPTIC OLECRANON BURSITIS in November 2020.

    I am on CELLCEPT and MESTINON  … so if I am in remission now, do my scores lower?  and how bad is my MG, according to my numbers?  Is there a website or MG News web page that tells me?    I noticed when I clocked into this website today, that there was an article about ANTIBODIES by Dr. Steve Bryson,  but I could not figure out how to ask him my question.  So, I am asking, if you have seen somewhere,  what my scores may mean  …  in ENGLISH ?

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