I was just diagnosed last fall and was put on mestinon – it appears to still be the drug of choice to treat the disease…I check every once in a while for any news on a new drug, but nothing so far. God bless you and your friend and good luck!
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Hi Kevin…I’ve had MG for about a year…I also find Mestinon doesn’t seem to help that much. I had eye muscle surgery last summer in the left eye.. No help. My eyes have gotten worse, so tomorrow I will have both eyes operated on in an effort to help.. I have surgeon from The Kresge Eye Institute here in Detroit who has operated on MG patients before. I don’t know if surgical intervention is an option for you, but you may want to ask your doctor.We’re very optimistic about tomorrows surgery…best of luck to you!
My heart truly goes out to you and also aches for you. I too lost my dear husband on Feb 28th of this year. I alone took care of him for many years, as he became weaker from 2 types of cancer and a host of other ailments, including a fall that left him with a broken neck on top of everything else. In addition to the heartache it can be very surreal. Some days an hour at a time, some days a minute at a time. I feel exactly as you do about people listening, support groups, and my own personal buggaboo, unsoliticited advice from other people, especially women who have never been in our shoes and can’t even begin to understand the depth of the pain. I can tell you this much that I know for sure and have learned so far in the almost 4 months he’s been gone…..ultimately, you will go through this on a “me, myself and I” basis.
No matter how much loving support you have, you must make the journey alone. By that I mean that only you can decide when you are ready to move ahead, whether it’s
going through his belongings, changing your home a little to suit you, if that’s important to you, or coming to grips with sudden reminders of his loss, such as being at the store and seeing a favorite treat he used to love and not buying it as you would have at one time. My husband loved fresh corn on the cob, it seemed strange and was painful to only buy two ears instead of the six or 8 I used to. Every day there will be reminders…sometimes you’ll smile at the warmth of the memory, sometimes you’ll start to sob at the devastation of your loss. It slowly does get better, slowly gets a tiny bit easier. About 6 weeks ago, I came home one evening and thought to myself, it’s good to be home. That was the first time since February I felt it was MY home and sanctuary. I don’t know if what I’m writing will make any sense to you or not as everyone grieves differently. But, there can be a happy life ahead for you. I know there will be for me. More than anything, have infinite patience with yourself. Do whatever you feel the need to do, regardless of what anyone says. If you don’t feel like cleaning…don’t….it’ll wait for you. You’ll establish your own new life’s routine.
Please know you have a new friend who sends you love, hugs and prayers for the strength that you need to make the journey. You’ll be OK – I know you will. I’m here if you need me – please keep me posted on how you’re doing….I do care…
I was diagnosed with Myasthenia Gravis in Fall of 2011, after having horrendous double vision and ptosis for a year prior. My left eye was operated on last summer and this coming Tuesday (6.26), both eyes will be operated on. Has anyone had this type of problem and how have your eyes been since surgery?
Due to a problem with my DNA discovered 7 years ago, my immune system has been so badly effected, that in addition to the Myasthenia Gravis, I also have Parkinson’s Disease and Lupus. My surgeon and my neurologist have both positively confirmed that it is the M.G. that is destroying my eye muscles as well as other muscle groups in my body.