TaylorCZ

203d

Hi! I was diagnosed with myasthenia gravis in January of this year, and I feel like I keep getting sicker and sicker. My MG affects everything, and it’s difficult to do any tasks (e.g., walking, cleaning, talking) without wearing out my mestinon.

Does anyone else have this problem? Has anyone with severe generalized myasthenia gravis gone into remission after a thymectomy?

Thanks!

Myasthenia Gravis (MG)

Acute Anxiety

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  • Jimjr

    203d

    Had it 3 yrs now. Tired, weak, poor vision. Been getting IVIG (infusion of white cells). Helps and in the next 3 days will get some energy but will wear off in a couple of weeks. Had an insurance problem but suppose to be back on track next week. At an all time low now. Missed almost 2 months. Said that they were going to add something else to the mix. Soliris once a week injection but now they said they are getting good results with something else. Haven't said what yet but they said they are switching their patients to it cause it is a shot every 8 weeks instead of each week. Will keep you posted. I think a thymonectmy ? Is a last resort.

    • cabbage

      150d

      I am waiting for my doctor's to do the thymectomy but they are stalling alot ,I don't know what else to do with everything I just want to be able to do things. Again

  • meesa

    203d

    I wish I could be positive and say I improved after my thymectomy but I didn't. I'm about the same as before, only mestinon doesn't help my weakness. I'm seronegative and pretty treatment resistant, so I may be a unique case but just throwing it out there. Hopefully things go better for you.

    • TaylorCZ

      203d

      hi! Thank you for replying to my question, and I appreciate the honest response. I’m seronegative as well, and nothing seems to work for me either so far. I hope in the near future you’ll find a treatment that works for you. Thanks again!

      • meesa

        202d

        Glad to help in some way. There aren't many with MG on this app, so if you ever need to talk feel free.

      • cabbage

        150d

        oh I am seronegative also ,none of the meds help they just give me a reaction ,have tried all of them and my doctor wants to give. Me meds before hand and I don't want that ,what else can they try

  • cabbage

    150d

    Oh my I have mg and chronic anxiety and my doctor says the anxietyakes the symptoms worse that I need to have a better control of the anxiety ,but it's hard ,I feel the same way as you ,talking takes a lot of breathe ,walking ,sometimes and I can't cook and do things I did before. Unless I have someone to help me ,I don't like asking for help I am in Texas and go to Baylor the big hospital but they are taking forever to get me in to see the doctor ,what else can people like us do ,I want to get better

    • Emmma

      99d

      I also have anxiety and MG They do not play well together. One gets worse the other gets way worse for me at least.

  • Emmma

    99d

    Everyday I struggle with what you described.I am scheduled for a thymectomy in September. If you ever want to talk I’m here as well!

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