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Hi, I’m Catherine. I was diagnosed AChR and Musk negative and RyR (Ryanodine Receptor) positive in 1/21, via new blood test which became available at Athena (?) labs. I was diagnosed with Reynaud’s in my mid thirties . I am now 69 yo. I was started on IVIG (Privagen) every 28 days and 180 mgs of Pyridostigmine every day. (It is interesting to note, the IVIG immunotherapy drugs are made for Seropositive MG patients according to my Neurologist. There are no specific treatments yet for Seronegative MG patients !) I have also been diagnosed with Obstructive Sleep Apnea, but am unable to sleep with the nose pillow and strap. My first symptoms were systemic fatigue and blurry vision. I have moved up to 360 mgs Pyridostigmine per day. I experience severe abdominal muscle cramps, occasional difficulty swallowing and weakening of my hands and legs. In the last two months I have lost the muscle ability to speak after over exerting myself. Recently, my IVIG was changed to Octagam and my dose increased from 60 to 80mgs (over two days) every 28 days. I am feeling actually much better with this protocol.
Makes me wonder how good I could feel with a protocol actually designed for my illness!