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  • Your most significant concern with having Myasthenia gravis?

    Posted by Jodi Enders on November 8, 2023 at 5:00 am
    What is your most significant concern since being diagnosed with Myasthenia gravis (MG)? My mind constantly ponders future treatments, finances, insurance, assistance, and quality of life. 

    Do your MG stresses often concern more immediate or pressing realities, such as an upcoming appointment or procedure, or more long-term, down-the-road worries?

    Have you already experienced this fear become a reality? Or is your concern rooted in a downward spiral thinking of all possible negative outcomes? Or possibly originated from something you read?

    Gail replied 6 months, 2 weeks ago 5 Members · 5 Replies
  • 5 Replies

    November 8, 2023 at 2:33 pm

    My concerns are more long-term. My only short-term concern is making sure I can avoid my first MG crisis. Long-term, I worry about: 1. How long will the money last (I’m 75)? 2. Will Social Security and Medicare survive after the next election? 3. What if my wife needs long-term health care,too? 4. Will my state retirement and Part B plan survive the next state elections?

    As you can see, 2, 3, and 4 all relate back to number 1.

  • Cheryl

    November 8, 2023 at 3:57 pm

    Like Greg finances for the future are of concern. Being sero neg and therefore not having MG per neuro( he also disputes 3 pathologists about IBM or PM as only he can diagnose) who concedes that mestinon helps me greatly but it helps a lot of people!!!????! Am a bit worried if suddenly can’t have that covered as is only way I can be independent. Paranoia has made me cut spending down again as it was before got SSDI…$600/mo. Grateful to own my home and son lent me a van. Instead of hiring things out am doing them myself, glacially slow and with difficulty but each thing done helps me not feel as defeated most days. Am ambivalent as some people get treatments that make them so very functional and mestinon just gets me off the start line but I would be devastated going from what I used to be to this again and yet the thought of the rest of my life just being a sad,scared, weak, dizzy, weak existence is unacceptable. So I am stuck between living safe, small life or try to be more as I was and make a colossal fool of myself as I fail. So many thoughts with many sides in this head. Will now go try to put a bike rake together in hopes that soon will ride it… end result unclear.


      November 8, 2023 at 10:44 pm

      Being sero neg, you should seek out the best, most experienced neurologist available in your area/budget/health insurance network. Too many rookie neurologists need a definitive test for MG. I’m in a few support groups, and members can tell in 5 minutes if you have MG.

      I asked my first neurologist how many MG patients he has. He said “One”. I was afraid to ask if it was ME.

      Do your research, journal, join a (alas, Facebook) support group or two.

  • Barbara E.

    November 11, 2023 at 12:00 pm

    My greatest concerns are fatigue and isolation.

    The extreme fatigue hinders my ability to do many things, including maintaining my home. Since I live alone, I don’t have anyone to help at home.

    In addition, vision problems (ptosis and strabismus) make driving impossible. This mountainously affects my ability to get out for both errands and social reasons. I was so accustomed to venturing out before on my own, but now I’m trying to adapt.

  • Gail

    November 11, 2023 at 3:45 pm

    I am so sorry. I have some of the same issues and it’s so frustrating and difficult. I’m going through a flare right now and hoping things will get better soon and hopefully for you too.

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