• Douglas Manning

    Member
    May 29, 2024 at 9:50 pm

    After reading the breadth of replies and experiences I can say mostly how very fortunate I feel. I have miserable case refractory generalized MG and have the additional autoimmune diseases of Celiac disease, and diabetes. On top of that is idiopathic iron deficiency anemia (most likely courtesy of absorption issues and Celiac disease). So, why do feel fortunate? The hospital system where I get nearly 100% of my care is such a cohesive interconnected organization. Many teams support me, primary care / internal medicne (do whatever you can to find a Doc who will be your champion, coach, and advocate), Neurology, Hematology, Endocrinology, Gastroenterology, Opthalmology, Nutrition, Speech Therapy, and Physical Therapy. Every group will have recommendations for dietary supplements and medicines. Each group must be told (again, again, and again) that you have Myasthenia Gravis! I do wear a medical alert tag, you never know when it will be informative! All that said, I have “prescribed” fiber, probiotics, a multivitamin, B6, B12, Folic Acid, Vitamin C, Ferrous Fumerate, Vitamin D / Calcium, Calcium Carbonate, plant protein / milk protein to maintain consistent daily protein intake, psyllium fiber to maintain consistent fiber intake and all the Rx meds. It is dizzying at times but every group I see has a complete and updated list of everything I take and with the help of my primary care coach and neurologist we try to keep everything in balance! It is my plug for electronic patient records. In my case any change made in either my Rx or supplement medicines (never fool yourself, supplements are medicines) cascades to every care team. My strongest advocate is my spouse and that’s where I am the most fortunateūü§ď

    It’s been 10 years since I was quickly diagnosed with MG at 57, and I hope to say I will be fighting this disease for another 25!

  • Barry

    Member
    July 5, 2024 at 2:44 pm

    Be very careful with anything Magnesium. It can interfere with Myethenia drugs.

  • Wayne Eisen

    Member
    July 10, 2024 at 4:39 pm

    As I’ve posted before, for those who take prednisone and suffer bone density loss, collagen will increase bone density √≤f taken in large amounts. It can be added to smoothies, soups and stews. I use a pure powder form. It impacts all parts of the body. Best wishes, Wayne

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