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Unusual MG Symptoms?

Hi MGers, hope your all coping ok. I was diagnosed with MG 2 years ago after waking up with double vision (which I still have). I had an almost cancerous thymoma removed robotically a year and a half ago. I have been lucky to date that I have had no other symptoms but just recently I have shoulder/neck aching and neck clicking when I turn it. Also have aching pectoral muscles/arms and jaw that comes and goes. Anyone else experienced this? I am of course hoping that it doesn't get worse as I am 2 years in to diagnoses. Any reassurance would be greatly appreciated. Thanks in advance.

  1. Hello
    3 months ago, i srarted Vyvgart Hytrulo, yes its a quick injectuon but the side effects are making me want to go back to Vyvgart.
    After treatment, my body ACHES, !!!! my right arm experience aching, numbness,
    Neurologist, states he doesnt think its the Vyvgart Hytrulo, i know its the Vyvgart Hytrulo.
    Anyone else, experencing these symptoms.

    Thank you
    Terri Merritt

    1. Yes, I am having the exact same issue. I have been referred to physical therapy. My neck and shoulder are getting better with chiropractic treatments.

      1. I am not sure if you have seen an ocular neurologist. My ocular neurologist has put prisms in my glasses and that has improved my vision.
        I also have had symptoms of very weak legs and arms, I drift when I walk, also my feet flap as I walk, and my equilibrium sometimes is unbalanced. I have had several other issues that have been greatly aided by having honest conversations with my neurologist. She has helped to arrive with the best combination of medications.
        Of course, I must admit that having my husband accompany me to my doctor visits helped to pinpoint issues.
        Sometimes I had a tendency to either forget at the moment or stumble when she (the doctor) asked pertinent questions.
        At the beginning of my search for the correct diagnosis for my symptoms, my husband had to accompany me to all of the different neurologists. I was not able to drive. He was a godsend because he was able to give her a more honest and concise answer. I flustered easily because of my frustration with the symptoms, and felt lost in understanding what was happening. If you have someone who knows and/or witnesses your bouts that can accompany you on your doctor visits, that would probably be helpful.
        I have now been under my neurologist's care for about 4 years and I still have some days that I feel like I digress, but I have a lot more good days than bad. I've learned that all of us with MG respond better to some drugs than others.
        I guess the point I am awkwardly trying to express is that it may seem as though things are tough but with the help of family, doctors, and friends the path to a better day is possible.

        1. Hi
          I have similar symptoms few months ago
          Regards Zsolt

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