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Three crisis in 5 months

My Mg manifests itself in my ability to be able to walk along with vision neck muscle and not to much in facial events. It also steals my ability to speak and can do that rapidly. if I am stressed or get angry for long ,I will suffer greatly the next day. I was diagnosed through Blood work in Late March . It had been misdiagnosed as a spinal issue since 2015. I am kind of living on the borderline of crisis being on the usual drugs after 2, 5 day rounds of IVIG. I am 70and this is not how I expected my retirement. Not to optimistic about life but trying to be. Will there ever be return to a good life?

  1. Hey, I am so glad to hear you finally got a corrected diagnosis. Have you been able to get an appointment with an MG specialist and begin treatments?

    - Jodi, Team Member

    1. Hallo Jimcin,
      I am very sorry that you are suffering and can understand how you feel. I am 67 and also have MG. It is a 'strange' kind of illness which steals from one in a number of ways. My Doctor has me on Immuran and Mestinon and Cortisone . I also had quite a few hospital visits up to now and was in ICU, and got Polygam drips.
      It is difficult to come to terms with physical activity being greatly reduced. I mean for eg to walk is not just a matter of getting up and there you go!
      Anything physical needs careful pre-thought and its tiring. I have cramps and pain and nothing to take for that. And my neck! And I may not drive a motor vehicle.
      My Doctor told me that Polygam does not work for me anymore so next time it will be Retuximab drips. I read about it and the side effects are drastic, so I decided that I cannot do it.
      MG is what it is, but I try to focus on things that bring me joy and find that to be comforting in a way.
      My best wishes to you and everyone else who suffers from MG.

      1. It is so true ,with MG you never know how the next day or even hour will be for you. I also check for what side effects treatment may be and opt out for some now. I appreciate your words of experience and kindness . Thank You !

    2. I was diagnosed in 2020, It started with not being able to chew and not being able to pronounce words with an R or S in them. Then the physical toll began. I had a pickup, that was to high to get into, so I switched to an SUV, I would get home from work, barley being able to move and lift my feet, trembling from pain and discomfort I would feel. I thought if this is the worse I experience, this is going to be cake.

      It wasn't. By the end of 2020, sometimes I wasn't able to speak at all, rinse out my mouth, brush my teeth or shave. These symptoms would come and go. In 2021 I started feeling pain or discomfort in hands, arms and legs. In 2022 I had three crisis in three months. Each more sever then the first.

      I experienced new symptoms or a severity of previous symptoms after each crisis. I take mestinon and prednisone, after the last two crisis I had plasmaphereses. A couple of days after getting out of the hospital, the last time, I started Vyvgrt. It's been almost a year now. That treatment makes me feel almost normal. Symptoms I experience now are occasional daily discomfort arms, shoulders and legs, weakness once I walk more then a block, discomfort in my neck when I am stressed out, difficulty breathing and discomfort or pian at my diaphragm, the last week before Vyvgrt treatments begin.

      There is no difficulty chewing, brushing my teeth, difficulty with speech. I run into people and they say you look good. But it is just surface. Truth is I can't work hard, I can't move fast, I can't move for a long time. I hear people go into remission, I am looking into this. Every time I feel like I am getting better, something happens, to let me know that is not the case.

      Last 6 months I have focused on learning all I can about the disease, taking naps or just laying down and closing my eyes for 20-30 minutes. I wake up everyday expecting the unexpected, and go to bed thinking it was a good day. I have friends and loved ones say it is mind over matter. I think they say that because they don't see the person I was, before this started.

      It is not mind over matter. This is an insidious disease. Before this disease I made sure I was knowledgeable about everything I needed to know about I armed my self with the tools I needed to get through the day and prepare for the day to come. I learn what I can of the disease, about people who have gone into remission, about what makes things worse for me. I show gratitude and appreciation. for my support group. I don't know if life will get better, but I can think, I can talk, I can read, I can laugh, I can sing. I wake up expecting the unexpected. I think that is the best we can do.

      1. Hi , thank you for sharing your story. It is commendable the way you have shifted your outlook and find things to be grateful for each day. And I'm glad to hear vyvgart is helping you, too. It sounds like your loved ones are well-intentioned when they say "mind over matter," but I can imagine it's still be frustrating to hear. Thanks again for your message and your lovely sentiments. We are glad you are a part of this community. Best, Lauren ( Team)

      2. I thank you for your review on VyVgart and it's effect on you. I also have been offered "advice" on what I need to do such as "work out and build your muscle back up"! Above all I am trying to focus on what I still can accomplish ! Thanks

    3. hello i'm sorry you've been misdiagnosed for so long. But I am also happy you are finally properly diagnosed with MG and receiving proper care. I hope you are able to recover quickly and safely so that you are able to enjoy your retirement. Wishing you a speedy recovery. - Jazmin, MG Team Member

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