FAQ/Help |
Calendar |
Search |
Today's Posts |
|
Myasthenia Gravis For support and discussions on Myasthenia Gravis, Congenital Myasthenic Syndromes and LEMS. |
Reply |
|
Thread Tools | Display Modes |
04-28-2019, 11:41 AM | #1 | ||
|
|||
New Member
|
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?
|
||
Reply With Quote |
08-27-2019, 09:31 AM | #2 | ||
|
|||
Junior Member
|
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. |
||
Reply With Quote |
Reply |
|
|
Similar Threads | ||||
Thread | Forum | |||
Car accident back pain and no (or miss) diagnosis ) diagnosis | Chronic Pain | |||
Got a diagnosis | Myasthenia Gravis | |||
Diagnosis | Traumatic Brain Injury and Post Concussion Syndrome | |||
Diagnosis Parkinson's Disease: You Are Not Alone Video Diagnosis Parkinson's Diseas | Parkinson's Disease | |||
Fibromyalgia Syndrome: Presentation, Diagnosis, and Differential Diagnosis | Fibromyalgia and Chronic Fatigue |