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I have had MG for just over 30 years. I had a malignant Thymoma. Thymectomy and radiation therapy and lost the use of my left lung. I take 3- Mestinon 180 mg Timespan, 3- 60 mg, 2- 500 mg cellcept, 700 mg DMAE supplement and Ultomiris treatment. I had my third loading dose January 30. I have been on prednisone and went from 175 to 265 pounds. I didn’t have the strength to carry the excess weight. I was taking 60 mg five times a day to start and prednisone every two hours.
They had to ween me off of the prednisone over two years. I have had plasmapheresis 4 time and IVIGG 5 times. My MG has been a roller coaster ride for sure. I am doing well on my current treatment.
One thing that I learned early on, is that everyone with MG have one thing in common. We can take each others medication, but at different dose. Everyone has different level’s of MG. No two people will have it the same. What works for one, won’t necessarily work for the other. Homeopathic or other wise. I was part of a study group and they found out that it can be hereditary and skip several generations.
The one and only thing that I can tell anyone is, never give up. No matter how down you get, keep searching for the treatment that works for you. Whatever treatment that you try, just keep trying.
The one thing that I have recently started, is the DMAE Dimethylethanolamine. It is an all natural supplement and increase’s the acetycholine in your body. This is the signal that transfer from the nerve to the muscle receptors. The C5 antibody is what attacks the acetycholine to reduce the signal to the muscle. Mestinon helps fight the C5. The more signals from to muscle the more likelyhood of strength. So far it is helping.
In closing, just keep trying whatever works and when it quits working, move on to the next treatment. NEVER GIVE UP! Something will work. Take care and God Blees evreyone.
