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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Dizinerd 04/06/2012

First of all I'd like to say I'm sorry I haven't been around much. But it seems that after almost 25 years in remission my MG has returned. It's funny because I found this place looking for info on MG. I was looking because I had been feeling a little fatigued. I tried to deny it and convince myself that it was just stress or something. When I started having trouble breathing I knew it was back. I went to the neurologist and he ran some tests. I already knew what he was going to say. I have been reluctant to post about it because I was the guy who beat it. I didn't want to discourage anyone. I did have almost 25 years in the prime of my life MG free! For that I am truly thankful. We'll see what happens down the road. But for now I'm doing pretty good with the mestinon and azathioprine. I tried to hide from it but it tracked me down! Kinda like that guy you never settled that bet with back in high school. "Dude! It was like almost 25 years ago! Get over it!"

Guess I shoulda paid up...

:D

txkiki53 04/06/2012

Pleased never feel you discourge anyone, we are all here for each other no matter what part of the walk of MG we are in.. I pray better days ahead for you. Annette

Ceegee22 04/06/2012

Your story would never discourage anyone, because you had 25 good years. It actually give us all hope that the same could happen to us. Sorry to hear your MG is back after all that time. I am glad you came back to DS though.
Hugs, Cathy

bweeds 04/06/2012

Well you know we missed you and were thinkng about you. At least one of our folks can relate to a long remission with exacerbation.
I have just had one long exacerbation! Now I am doing well and tryng to get the stamina back to be with my granddaughters and hike the mountains.

Wishing you well and sorry that was why you went away and glad to have you back. 25 years symptom free sounds pretty good to me! b.

catnap2 04/07/2012

I agree with the others, we all know how unpredictable MG is and it IS good to hear you had such a long good stretch. I think it's very encouraging to think that could happen to any of us. I hope you are just having a momentary reminder of MG and will soon head back into remission.
Cathi

Kimber71 04/07/2012

Sorry to hear its back for you. Any idea what caused your remission previously or was it spontaneous? And was there any definitive precursor (like an illness) to its return?

Kimber

DebbieF777 04/07/2012

Hope MG just makes a quick visit. Yes, your 25 years of remission are an inspiration, not a downer. Blessings,
Deb

tesb 04/07/2012

I was in remission for 8 years and its back with a vengeance and I am struggling. Wishing you the best
Theresa

newmugg 04/07/2012

Was wondering where you were. Thanks for coming back to let us know.
25 years of remission and it's back. That is a hard pill to swallow (no pun intended). Since MG never seems to go completely away, hope the meds push it back to the corner where it belongs.

hugs,
sherry

You post got me to wondering--we hear of people going into long term remission. Has there ever been a follow up study to see the numbers of how many actually stay in remission and those who have recurrence?

Dizinerd 04/07/2012

I don't think there was anything that triggered it. It seems to have come back pretty slowly. I think it might be karma from making all
those pollock jokes about my wife and kids. ;)

mermaid3 04/07/2012

So thats where you been!! Guess you forgot this rollercaoster ride wasnt exactly a fun one...hope your ride is short! I certainly missed your words of wisdom and def your sense of humour we always need lots of that !! Welcome back hope everyone else in family is doing well. Ain't karma a b****! lol

Thirteenblessings 04/07/2012

Here's to yours and all the other remissions yet to come, including your next one!!! It's only rootbeer though, I don't drink, well at least not yet!! love, carla

catladyme2 04/07/2012

It's tough to realize that after 25 yrs of remission MG is back. I know because I was in remission for almost 30 yrs. Then gradually my symptoms started showing up again. At first I had a hard time accepting it. Now I'm just so grateful that I did get a second chance to live my life and be normal. Also now, there is much more knowledge on the care and treatment of this disease. I wish everyone could experience remission.
Sending you strength,
Gail

cgreens 04/07/2012

Gotta be tough!

Plenty of support around here you know you can depend on.

You did it once, you can do it again. Perhaps there will be a time for 25 more years of remission?

Best wishes,

TJ

larissam 04/08/2012

Hoping that MG is once again just passing through.
It's nice to meet you,

Larissa

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