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Old 01-01-2012, 12:58 PM   #1
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Myasthenis Gravis newly diagnosed


Hi all, happy New Year!
I have just been diagnosed with MG and from everything I have read I am really scared. This all seemed to start in July 2010 when I had what at that time was diagnosed as bell's Palsy. Twice within a few weeks time in 2011 I thought I had a recurrence of Bell's.
My GP was not so sure.
She thought I had had a T.I and sent me off to a neurologist. He questioned the heck out of me and at the end of that I said-this is just something silly right? Aside from my normal pain issues I didn't feel bad-older and weaker but I chalked that up to turning 50-so imagine my shock when he said I think you have "Myasthenia Gravis"
I was in shock and have been doing tests for over a month now. Started on Pyridostigmine. Nasty stuff. I get the worst stomach cramps with it but I can swallow and enjoy eating without choking so its worth it. My droopy eye issue has gone into remission but my vision remains to be a problem. I have double vision but in a different way than I have ever experienced. It isn't two images overlapping-it is 2 images. Like a split tv screen. And then there is this ghosting-which is when I try to read a book or magazine or any kind of print I have like a ghost gray image above and below the line of print.
I don't really have any questions right now. I think I am still having trouble accepting and believing that this is real.
What I am hoping for from you guys is to hear your stories and how you are dealing with this crazy disease and how has your life changed or if it has changed.
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Old 01-02-2012, 05:46 PM   #2
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Re: Myasthenis Gravis newly diagnosed

HI,

I actually just joined this board for the exact same reason. My husband was recently diagnosed with Myasthenia Gravis. We are also in shock and very scared after reading all about this dissorder. My husband did have a thymoma and it was removed on November 30th. After which we were pretty much lead to believe that although it would not be immediate that he should have a lot of improvement. So far he has only had a worsening of symptoms. The Mestinon worked prior to surgery and post surgery it hasn't worked and now they have added Prednisone and so far no improvement. He is supposed to return to work in two weks and he basically cannot see well enough to drive or work and since this is a new job we are very nervous. I was hoping to find out what others experience is with how long it takes to get symptoms under control and I seem to be reading that people are living with symptoms for long periods to permanently with only occasiona; relief from symptoms. Is that true? Is there a norm or pattern that most people seem to experience?

 
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deeannek (01-13-2012)
Old 01-13-2012, 07:47 PM   #3
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Re: Myasthenis Gravis newly diagnosed

I wish I could answer some of your questions but I am new to this too. Have you been to the Myasthenia Gravis siye? I went there and read some letters that people had written about their experience with MG maybe that would be helpful for you too. It doesn't look like too many people visit this board so-Maybe we should try Muscular Dystrophy board? I hope your hubby starts feeling better soon. I have been lucky so far and my catscan for my thymus came back normal. My biggest complaint is I am so tired all the time and really really weak. I guess it doesn't help that I already have my neck and back fused and that limits my mobility and now this...
Hang in there!
Dee
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Old 01-13-2012, 07:49 PM   #4
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Re: Myasthenis Gravis newly diagnosed

I wish I could answer some of your questions but I am new to this too. Have you been to the Myasthenia Gravis siye? I went there and read some letters that people had written about their experience with MG maybe that would be helpful for you too. It doesn't look like too many people visit this board so-Maybe we should try Muscular Dystrophy board? I hope your hubby starts feeling better soon. I have been lucky so far and my catscan for my thymus came back normal. My biggest complaint is I am so tired all the time and really really weak. I guess it doesn't help that I already have my neck and back fused and that limits my mobility and now this...
Hang in there!
Dee
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Old 01-14-2012, 10:48 AM   #5
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hnickole HB User
Re: Myasthenis Gravis newly diagnosed

Hi Dee,

Thanks for the suggestion of the Muscular Dystrophy site. I woulod not have thought of that. I am wondering if you are female. We learned last week when we swithched neurologists that females especially younger ones are more responsive to treatment and unfortunatley for my husband older men (he is 55 not old but older) do not respond as well. They just started him on IVIG and so far we are on the third treament and haven't seen any improvement. Hopefully soon. I am sorry you are also a member of this club. I never even heard of it and really wish I hadn't. Good luck and I wish you the best.

 
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Old 01-26-2012, 10:35 PM   #6
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Re: Myasthenis Gravis newly diagnosed

I am a 50 year old female. So far things have been ok for me. I have to take medicine to help with swallowing and I get tired easy but I know it could be worse... I want to go to Indy to see the SuperBowl village since its only an hour drive from where I live but I think between MG and spinal Stenosis that it is probably more than I should try. That bums me out because it is kind of a once in a lifetime moment.
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