Myasthenia Gravis Support Group
Myasthenia gravis (MG) is a neuromuscular disease leading to fluctuating muscle weakness and fatiguability. The hallmark of myasthenia gravis is muscle weakness that increases during periods of activity and improves after periods of rest. Although myasthenia gravis may affect any voluntary muscle, muscles that control eye and eyelid movement, facial expression, and...
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Saturday, April 14, 2012
So it's 9:15pm and the mg specialist just left my room. He wanted to examine me at the end of the day when mg symptoms wouls be at there worst. Smart man!He examined me very thoughly and put me through numerous tasks my doc has never done.
He looked at me and said there is no question you have generalized myasthenia that is rapidly progressing and you need a change in treatment plan. You are clearly one of the 10-20percent that have the unknown antibodies, and you need celcept after your plasma exchange. Then he said, and even though you dont have a thyoma,we may need to send you up to johns Hopkins to have your thymus removed.This I will have to wait on as I am beyond used up sick and vacation time with all this hospital business these last several months.
He saw me one other time 6 months ago,at my first resritory crisis and is the one who gave me mestinon. He was not been taking new patients at his practice so I wasn't able to get him as my reg doc but 2nd time now I get him in hospital when in bad trouble.
I feel someone was watching over me to send him to me again.
So this amazing for me.I mean, im getting treatment with plex and celcept now, a diagnosis,again!! and suggested more treatment with possible thymectomy. 1 week ago I had blue nails and no treatment plan,searching for help.
Thank you all for pushing me to go to the hospital that night and supporting me through this confusing journey the last 6 months.I dont know where I'd be without all of you.
Hugs,
Jeannie- Should be going home this coming Friday!
Saturday, April 14, 2012
So it's 9:15pm and the mg specialist just left my room. He wanted to examine me at the end of the day when mg symptoms wouls be at there worst. Smart man!He examined me very thoughly and put me through numerous tasks my doc has never done.
He looked at me and said there is no question you have generalized myasthenia that is rapidly progressing and you need a change in treatment plan. You are clearly one of the 10-20percent that have the unknown antibodies, and you need celcept after your plasma exchange. Then he said, and even though you dont have a thyoma,we may need to send you up to johns Hopkins to have your thymus removed.This I will have to wait on as I am beyond used up sick and vacation time with all this hospital business these last several months.
He saw me one other time 6 months ago,at my first resritory crisis and is the one who gave me mestinon. He was not been taking new patients at his practice so I wasn't able to get him as my reg doc but 2nd time now I get him in hospital when in bad trouble.
I feel someone was watching over me to send him to me again.
So this amazing for me.I mean, im getting treatment with plex and celcept now, a diagnosis,again!! and suggested more treatment with possible thymectomy. 1 week ago I had blue nails and no treatment plan,searching for help.
Thank you all for pushing me to go to the hospital that night and supporting me through this confusing journey the last 6 months.I dont know where I'd be without all of you.
Hugs,
Jeannie- Should be going home this coming Friday!
I'm headed for the bunk (falling asleep, over the keyboard).
But will write here again, on Sunday.
Disability - is a hard road.
Meaning: it can mean - a big change in lifestyle.
I can give you disability advice, if you need.
(I've been disabled since 2005.)
Hugs - Ross
So happy for you!
What a long, awful struggle.
Bless you! Bless Micki!
Bless all - our DS Friends!
Okay - you are still pretty sick (duh).
But now? You are - finally - gonna get some real help.
(And - you are getting that help, as we speak.)
You Go Girl!
God Bless The MG Specialist!!
Hugs & Love - Ross
PS: Sarah is right. It does sound like: you are in, for a long period of treatment. And, maybe? Disability is something to think about. There is even: SS temporary-disability.
But right now? Just focus on your treatment-plan!
Maybe, disability will just fade into the distance!
So glad your symptoms are being seen for what they are. This specialist sounds great. Can you now get into his practice?
Take care. Sadly, work may have to take a back seat to your health right now. Hoping you had a successful plex day:)
Hugs,
sherry
Just wanted to let you know that I am thinking of you today... hope the day has gone good with the treatment.
luv and hugs from Texas
Annette
On your way to recovery.
Ann
Thank you for taking the time to update us.
Larissa
J
Continue to get strong!!
May you never get diagnosed in a hospital setting ever again!
May your nails never ever be blue again... unless you paint them that color!
Love ya!
Becca
Sorry you are staying in the hospital, but I am happy you are getting treatment. Let's keep you out of stays in the hospital, ok?
I am glad to hear the group has helped you so much. The group has helped me as well, and that very much includes you Jeannie.
Sending good vibrations to you...
Hugs right back at ya!
TJ