Thread: Newbie Question
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Old 06-13-2009, 02:26 PM
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erinhermes erinhermes is offline
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Join Date: Jul 2008
Location: San Antonio
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15 yr Member
erinhermes erinhermes is offline
Senior Member
erinhermes's Avatar
 
Join Date: Jul 2008
Location: San Antonio
Posts: 1,471
15 yr Member
Teeth Hey Sue!

Hello and WELCOME to the best site on the net for MG!

MG is called the "snowflake" disease for a reason - everyone is a bit different!Now, as for the progression, I think Brennan nailed it when he said everyone is unique as to how it affects them.

I know that I have MG that is a real pain in the butt - my first yr after being dx'ed I've been to the hosp so oftenthat everyone knows me by name. Not for crisis situations, just for "tuning" or "oil changes"........no biggie!

It is so great that you respond so well to Mestinon! You are prolly one of the lucky ones that will only have to take that for a while - that is AWESOME!

Big hugs!
Erin



Quote:
Originally Posted by suev View Post
Hi Everyone! Newbie Sue here.

I have been reading many of your posts and have learned so much from you folks willing to share. Experience is always the best teacher, but I am sorry so many of you have gained your knowledge at such great hardship.

Luckily, my neuro said on our first meeting, "I don't need tests to tell me you have MG." With that they gave me a pill and retested my strength in 20 minutes. That was when I discovered Mestinon works for me (they call it the Hercules pill in the office!). Bunches of tests were run (they wanted to rule out LEMS) and I didn't have any aCHr antibodies for MG as it turned out.

Even so, they believe it's MG. My case is very mild (especially compared to what I have been reading here) and I am responding super well to minmal doses of Mestinon 3x daily. From what I've learned here, I had a remarkably easy time getting a diagnosis!!

I have read this is a very 'individual' kind of disease - - I think someone here said it's known as the snowflake disease. I'm interested in progession mostly. Does this always, sometimes, or rarely progress with age? Is there any relationship between the way it starts and where it goes? Or is it really just a 'wait and see, everyone is different' thing. I'll ask neuro at my follow up next month - but any info would really be appreciated.

I know there are no guarantees - just looking for 'rule of thumb' info if there is any.

Thanks!! And here's wishing today is a good day for you....Sue
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