New Diagnosis
 

I was diagnosed with Myasthenia Gravis 4 weeks ago. On Mestinon and Prednisone. Still having some double vision. I cut down Prednisone dose myself because of side effects. I do experience fatigue, occasional shortness of breath,and sores on lips and inside cheeks as if I bit inside of cheek but I didn’t. My husband passed in November and the only family I have is my adult son who I am very grateful for. We are both mourning the death and now dealing with this. I’m a cancer survivor and feel this is so unfair, I’m in denial at times, angry and having a difficult time trying to adjust living with MG. I don’t have anybody that I can talk to that understands.Don’t know what prognosis is for me but as I research, it could be a bumpy ride. Any advice?

Hi

I was diagnosed with MG about a month ago but based on my health history I probably had it as far back as 2016.

My experience with MG is one of filled with consistent uncertainty. I have Generalized MG so I've been struggling mostly with neck, chest, hips, thighs, calves, hands and feet weakness. When I sit, my head is constantly swaying on its own. When I stand, my entire body sways on its own. Mestinon/Pyridostigmine helps but its not consistent - my body reacts to it differently everyday.

I danced professionally for most of my life and have taught dance for about the same duration so having this disease is both a curiosity and a curse.

I'm sorry to hear about your husband and I hope that you and your son can find a way to keep him in your hearts as you move forward in this next phase of your lives.