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  • Valuable Lessons from Rare, Chronic Diseases

    Posted by Jodi Enders on June 20, 2022 at 10:30 am

    Living with Myasthenia gravis may feel daunting and defeating at many moments. Nevertheless, I believe receiving a diagnosis of a rare, incurable disease can teach us lessons and bring wisdom. 


    I appreciate my diagnosis despite how challenging it is because it demonstrates the inner strength I have. I also feel that being diagnosed young helped me realize what and who are the essential things in life to value. To be present. I seek joy in little moments.


    Dig deep. What is something you are grateful this journey of illness has taught you?

    Amy Cessina replied 1 year, 10 months ago 3 Members · 2 Replies
  • 2 Replies
  • Bobbi

    June 24, 2022 at 1:47 am

    You have to advocate for yourself! I am so grateful  that they finally diagnosed me and I’m now on the right medication! Tell everyone you know that if a doctor tell you you have fibromyalgia because they can’t find what disease fits into their box, but your muscles are week and multiple doctors have said they think you have an auto immune disorder, then speak up and tell them fibromyalgia does not cause or weak muscles! One of the doctors I work for doesn’t even believe that it’s a real disease, but is a symptom of a disease! If it wasn’t for my own research and video I would still be taking medication that make MG worse! There’s Neurologist that are great and then there’s the one if the antibody test doesn’t come back saying you have MG then they don’t believe you have. 30% of people with MG doesn’t test positive for the antibodies. I’m one of those 30% they’ve test me for MG many times, but it wasn’t till an eye doctor said Bobbi I’m almost positive that you have MG , but you still need to go get a brain scan to rule out a tumor that I found out that I had it and still the neurologist that I had been going to was like the test came back negative, so you have fibromyalgia. So  I said no I don’t think so. I told him that my research said that 30% didn’t test positive for the antibodies and then I showed him videos of what happens to my eyes every night. Then he Shook his head and looked up at me and said “you’re absolutely right I’m sending you to someone that Specializes in  myasthenia gravis. Then I met the best doctor in the world! I got my life back! I’m so grateful to him for specializing in the many rare auto immune diseases! I wasn’t in his office more than 10 minutes before he said that I had MG and took me off medication that was hurting me and making my MG worse and put me on the right medication!

  • Amy Cessina

    June 24, 2022 at 10:36 pm

    Just to be fair the myasthenia gravis organization states about 10% of people are seronegative. Some say slightly higher but I’ve seen no data to support 30%.

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