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  • Craig Whitney

    Member
    October 20, 2023 at 2:38 pm

    Stress just kicks my gMG into overdrive, way more than I have experienced before my diagnosis in 8/2022. Hearing how other folks deal with it would be helpful.

    • Lor

      Member
      January 19, 2024 at 2:11 pm

      I had a meniscus repair on November the 1st 2023, was on non-weight-bearing crutches for 4 weeks and this caused a flare up. I am still in a flare-up and I am having terrible slurred speech. Please tell me this isn’t my new normal? Has anyone else had flare up symptoms and how long does it take to recover.

  • Diana L Ramsey

    Member
    October 21, 2023 at 8:09 am

    I’d like to know more about what it means to be seronegative.

  • Bli shame

    Member
    February 14, 2024 at 4:59 pm

    Have others had a problem with excessive sleepiness?

    • Craig Whitney

      Member
      February 14, 2024 at 6:41 pm

      Yes. Sometimes it seems like all I can do is sleep. Other days, not so bad. This may be an age-related problem, I am 76. But for the first year after my diagnosis in 8/2022, just getting out of bed before noon seemed impossible on most days. That amount of sleep was a big change in my life with gMG. Neurologist switched my treatments from Ultomiris to Vyvgart recently and that (and Mestinon, Cellsept, Prednisone) seemed to help.

  • MikeS

    Member
    February 16, 2024 at 4:16 pm

    1. Besides just resting or meds, are there other ways to deal with MG-induced muscle fatigue?

    2. What triggers have you discovered that will definitely induce your flare-ups and how did you learn to avoid them (the triggers).

    3. What solutions have you found that will relieve (some of) your side-effects from Prednisone.

    4. Same as (3.) but for Pyridostigmine (Mestinon).

    5. How much have virtual (Zoom) meetings helped you deal with your MG and specifically in what ways?

    6. Do you use cannabis for relief from MG and, if so, how does it help you?

    7. What online sources and websites do you usually go to for finding information/resources to help you deal with your MG?

    8. Would you support the establishment of an online “library” of information and resources for all MGers to use (not MGFA)?

  • paul spychalski

    Member
    February 17, 2024 at 2:08 pm

    Does Zilucoplan work???

    • MikeS

      Member
      February 21, 2024 at 3:37 pm

      As with any other MG drug, it may or may not work.

  • Frank Morrow

    Member
    February 21, 2024 at 2:30 pm

    How many members in the MG Community are taking one of the four new approved FDA Treatments for MG released since 2021? I’m under the impression that 50,000 to 70,000 people in the USA have some type of MG diagnosis.

    1) Vyvgart-(efgartigimod alfa-fcab)

    2) RYSTIGGƠ – (rozanolixizumab-noli)

    3) ULTOMIRIS – (ravulizumab-cwvz)

    4) ZILBRYSQ – ( Zilucoplan)

    Any type of subject matter that is able to compare or provide the patient with pro’s and cons is of great interest because most patients have to be able to self advocate for themselves to their doctors.

    • paul spychalski

      Member
      February 28, 2024 at 2:25 pm

      Pyridostigmine 30mg 3X a day.

  • Barbara E.

    Member
    February 21, 2024 at 6:27 pm

    When we get sick… Suggestions for dealing with illnesses (like cold, flu, and other viral/bacterial infections) without making MG symptoms worse (hopefully).

  • Cheryl

    Member
    February 21, 2024 at 8:20 pm

    Would like survey on how many people developed MG or got worsening after taking Levaquin or Cipro. Were you told of correlation? What antibodies did they find? Has it gotten better? Have you taken these antibiotics since getting MG?

  • Barbara E.

    Member
    May 11, 2024 at 1:26 pm

    I had a horrible allergic reaction to Levaquin before MG, so have avoided it since. Also, I and my doctors try to avoid any medication that’s listed as problematic for MG patients. I don’t want to make a bad situation worse.

    As for cannabis, I don’t want to take any chances at this time.

    I do find several MG support group zoom meetings helpful. Not only does it remind me that I’m not the only person dealing with MG, I’ve gotten many helpful suggestions from the other members. I found these groups through the MGFA website (started with local groups and attend other regions for special presentations).

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