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New Diagnosis

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Old 04-28-2019, 11:41 AM   #1
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Join Date: Apr 2019
Posts: 2
Default 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 didnt. 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. Im a cancer survivor and feel this is so unfair, Im in denial at times, angry and having a difficult time trying to adjust living with MG. I dont have anybody that I can talk to that understands.Dont know what prognosis is for me but as I research, it could be a bumpy ride. Any advice?
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Old 08-27-2019, 09:31 AM   #2
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Join Date: Aug 2019
Location: Kingston, Rhode Island
Posts: 5


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.
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