Forum Replies Created

  • Eric Werve

    Member
    August 17, 2022 at 9:08 pm in reply to: Describe Your Journey With MG in 3 Words

    Insidiously unique

  • Eric Werve

    Member
    March 29, 2022 at 3:22 pm in reply to: Where Do You Need Support in Your Life Right Now?

    I’m going into my fifth year after diagnosis. We have tried several approaches with minimal stability. Different meds in addition to IVIg, Rituximab (discontinued), and Soliris. I still have frequent bouts of fatigue and sudden weakness. At one point I developed DVT and blood clots in the lungs, landing me in the ICU for a little over a week. I am now on blood thinners and warned about falls and the dangers while on thinners. Since I experience sudden weakness, my exercise has become even more limited because I fear falling and having an internal bleeding incident. It seems with each treatment comes new complications. Have ideas or suggestions?

    Recently several stressors have increased symptoms. I am now trying Oxygen Hyperbaric Therapy to try to gain some stamina and decrease fatigue for our son’s wedding. Any data on the treatment?

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