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7CTKN4

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"Off and on symptoms throughout the day. Was sick last year with Covid-19 and almost died due to MG immune response. Been in & out of hospitals with a seeming continual flare ups. On Pyridostigmine, it helps but not good enough. Six 60 mg tabs daily right now just barely keeping me out of the hosp. Was prescribed Cell-Cept to suppress immune response now finding out it makes symptoms worse and have stopped taking it."self

  1. Yes, I know that the mega dosing of Vitamin D has to be watched in the hospital setting. Appreciate the advise on it.

  2. I am consulting with an acupuncturist Dr. & Herbalist today based on the Chinese treatment methods. Every case is different, so it is treated on an individuals specific needs. God bless you!

  3. I do talk with my primary care & neurologist. My primary care dr is learning about MG. She has 4 others with MG. The neurologist is open to whatever helps, but is very busy with a lot of patients.

  4. Do talk to your doctor. Vitamin D is "oil soluble" and it is possible to overdose easily. You can find medical doctors that will be open to discussing other paths with you. Juliana (Myasthenia-gravis.com team)

  5. It's great that you have been doing your own research and discovered what factors from your past might have contributed to your health today. I can't imagine how frustrating this has all been for you but I am so glad to hear you are taking a proactive approach. Just know you have a whole community here for support! Hugs, Kaitlyn (Myasthenia-Gravis.com Team Member)

  6. I seen my Neurologist yesterday and he agreed that I should stop taking the Cell-Cept. I have been doing a lot of my own research about this disorder. I have found out that my past exposure to lead over a period of time has been a contributor to my health now. I was an electronics repair technician 20+ years. Also some medical clues were there for a long time. One was elevated enzymes of my liver, now it is staying in normal range. Also Vit. B-12 and D3 deficiency, which seems to be a common factor with all of the auto-immune disorders. I have been checking into holistic healing as well as acupuncture & the Chinese Herbal treatment for MG & gMG. 97% remission success rate for the Chinese verses pharma's 63%. One other thing is mega doses of vitamin D3 which seems to put MG into remission. Research is being done to find out how the Chinese treatment works. Some hope in that direction. Indication is that Chinese treatment actually repairs the neuro-receptors at the molecular level. Of course everyone needs to consult with their primary care Physician. I get so fr

  7. Thanks for sharing with us. You've been through quite the journey. I am so sorry to hear about your COVID-19 experience and that your recent flares have kept you in and out of the hospital. We're glad you've found our community and hope the experiences shared here help. Have you shared with your care team that the Cellcept is making your symptoms worse? - Kaitlyn (Myasthenia-Gravis.com Team Member)