• Using Our Forums

    Posted by Kevin Schaefer on May 11, 2021 at 8:25 pm

    Hi everyone! My name is Kevin Schaefer, and I’m the Director of Forums for this site’s parent company. Your moderator is Jodi Enders.

    For those of you who have visited, registered and contributed to topics on the Myasthenia Gravis News forums, thank you! As a member of this online community, you are helping to create a platform that unites patients, caregivers, friends, family members, advocates, researchers, and medical professionals who strive to raise awareness for MG.

    If you are new here, please take a look around the different forums here. Registration is free — just create a profile. You can then read and contribute to a variety of different topics that might impact someone living with MG, or someone caring for a loved one with this disease.

    For members who have joined, it would be wonderful to hear your thoughts. Below are some suggestions to help you navigate the forum, and what to do once you have registered and created a profile.

    Join a Forum:

    There are some forums that are targeted to specific roles, such as separate forums for patients and caregivers/spouses. There are also forums that welcome anyone in the MG community, regardless of role, location or age. The forums will continue to evolve as members suggest new ideas each day.

    Contribute To a Topic or Start Your Own!:

    Within each forum are topics and discussions that involve both members and the moderators. These topics can be about anything that’s on your mind, from something you’re questioning to something you’re seeking advice about. They can also be posted to connect with others who might be in a similar stage of the illness as you are, such as seeking treatment or having just been diagnosed. There is no topic too large or small for the forums.

    Privately or Publicly Message Another Member:

    This feature is similar to other social media platforms where you can reach out to someone publicly (similar to a Facebook post) or privately (direct message). Perhaps a member contributed to a topic or started a discussion that really resonated with you, and you would like to learn more. You can private message them to connect directly about what they’ve shared. You can also use this feature to connect with moderators, and to ask them questions. Suggestions for discussion topics are welcome.

    Add a Friend:

    Members have shared where they reside, in hopes that local networking can take place. Regardless of geographical proximity, some members will form more natural relationships. The “add a friend” feature offers a way for those people to keep in touch easily and more frequently. This is similar to having friends on Facebook, as they will see updates and posts that you have made. It’s wonderful to see new friendships beginning to form.

    We look forward to having you join us!

    Cathie replied 3 months, 4 weeks ago 8 Members · 8 Replies
  • 8 Replies
  • paul spychalski

    Member
    November 20, 2021 at 7:59 pm

    I would like to ask a question, my doctor was mentioning an Immunosuppressant, has anyone had this done and ist there a reaction, good or bad?

    • Robert Perrou

      Member
      June 1, 2022 at 4:16 pm

      Paul, my doctor prescribed Imuran. I am currently on 200mg daily with no bad reactions. The only concern I have is that it suppresses vaccines that boosts the immune system like: covid vaccines, flu, pneumonia, etc.

  • farhana

    Member
    June 1, 2022 at 6:13 pm

    I took cellcept for couple of months but felt very weak after taking the medication so I stopped it. does anyone feel the same? Also I am taking mestinon for last 18 years. does it have any side effects?

  • James Lavertu

    Member
    June 18, 2022 at 9:49 pm

    Hi: I have read much of the information provided in these forums. However, coming from a small town, I feel it is an invasion of privacy to have to respond using one’s real name. Just wondering if this is a problem for any other participants. Jim.

    • Kevin Schaefer

      Administrator
      June 19, 2022 at 8:38 pm

      Hi, you’re welcome to use a pseudonym or just a first name. We just have members fill out a profile to verify that you’re not a spammer.

  • Joe Manley

    Member
    March 28, 2023 at 5:00 pm

    Been prescribed Vyvgart having been diagnosed late last year, 2022, but it’s a process and cost is extreme, like $6,500 or more. Was on regular daily treatment of  50 mg of prednisone and 180 mg  of Pyridostigmine. Understand that this drug is FDA approved 2+ years ago and wondering how others are dealing with its effectiveness and cost. I’m a proud VET but saving my money at 73, retired, dealing with diabetes and PMR too. I love Pickleball for exercise but come to play already exhausted so need breaks and my game has a noticeable reduction in my ability, just don’t have the endurance or energy anymore. Joe in Maryland!

    • Cathie

      Member
      January 19, 2024 at 5:49 pm

      Having trouble navigating forums. Can’t seem to send PM’s. Hope this is OK. Is $6500 for

      Vygart per dose?

  • Rakesh Sharma

    Member
    May 30, 2023 at 10:16 am

    Hi Kevin and friends,

    I am new to the forum and learning. Thank you Kevin for letting me know about the group and its rules.  I have recently been diagnosed with MG.  Consulted two doctors.  One suggested symptomatic treatment and the other Steroids and Immunosuppressants.  Not sure what to do but following Neostigmine and Pyridostigmine for the time being.  Shall be learning from your experience and shall try to contribute and help wherever I can.
    English is a foreign language for me, so please don’t mind my lapses on this account.
    Thank you.
    Best wishes.

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