I tend to be an impulsive, unscheduled person. I also have a great work ethic so self-employment is a joy for me. Well, adulthood has arrived – due to my physical (not aging) problems.
The Myasthenia Gravis has finally just disabled me. I’ve had issues for decades but this last decade has been hard. Now that I know I have MG, I also am aware that I’ve had it for at least 5 years and probably more. So instead of EDS driving my issues, it is obvious that the MG is ascendant.
The last few months have been a slow whirlwind for me - leading me to stop writing for a while. I'm still in early period of diagnosis of the Myasthenia Gravis, a rare neuromuscular autoimmune disease. Since my flare in October, my body has changed dramatically and figuring out what to do next has been a crazy making period for me. At least the diagnosis is confirmed and my neuro is trying to get approval for the next step treatment for me - IVIG. He says it make take 3 months to get it approved so I'm in a waiting pattern for now.
I have read so many horror tales in the Ehlers Danlos community. I attribute this problem to several factors. We spend so much time seeking diagnosis from multiple specialities. So many of us have medical PTSD - we are so used to not being believed. We are so complicated and rarely present the same as others with EDS since there are so many varieties. We really are zebras! New varieties…