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Severity of symptoms

My husband was experiencing muscle weakness in his legs for several years - needing to frequently "rest" between activities. We talked to several doctors with no real suggestions. Last year, he seemed to be experiencing an upper respiratory illness, and became extremely ill and was put on a ventilator for a month, with a diagnosis of sepsis. When he was being weaned off sedation, it was discovered he couldn't use his hands or lower arms. I'm sure since the focus was on saving his life (He had respiratory and kidney shutdown.), they didn't pay much attention to his situation. We are now a year out, and he has relearned to walk, off the trach, dialysis, and feeding tube, but still no use of his hands/lower arms. Neurologist just last week diagnosed MG. Dr's office trying to get approval for IVIG. We are trying to make sense of everything. Were the early weakness symptoms the beginning of MG? Was his illness a myasthenic crisis triggered by the infection/sepsis? Is there hope for regaining "any" function for his hands/arms? Has anyone else had weakness this severe? He has use of his shoulders, but no sensation/function from slightly above his elbows down to his fingers. I never really thought about how much we use our hands/arms! Any suggestions while we wait on insurance for approval of treatment? Thank you!

  1. Hello , thank you for sharing your husband's journey and you are an amazing wife for standing by him through this rough new chapter he is encountering. He has overcome so much yet there's still work to be done. I was diagnosed with MG in 2012 a month after I graduated high school. The overwhelming and daunting feeling these symptoms can bring is a feeling that many of us felt and can sympathize with you. I'm so happy the doctors have a treatment plan for your husband that always a step in the right direction. We are here to support BOTH of you. Please keep us updated. Wishing y'all the best. - Jazmin (team member)

    1. Hi , Wow you and your husband have been through so much. I am relieved to hear your husband is off the trach, dialysis, and feeding tube. That's huge! But I understand there are still sooo many remaining questions and challenges, especially as you wait to hear about treatment. Everyone with MG can be so different when it comes to symptoms and severity, but this community can certainly relate to that newly-diagnosed feeling when you're trying to make sense of it all. I'm hopeful others will jump in to share what it was like for them. In the meantime, I just wanted to let you know we are thinking of you and are here for you both. Best, Lauren (Myasthenia-Gravis.com Team)

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