Myasthenia Gravis For support and discussions on Myasthenia Gravis, Congenital Myasthenic Syndromes and LEMS.

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Old 06-05-2007, 08:56 PM #1
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welcome to NeuroTalk Miss~A~ though I am sorry to hear you are dealing with all this

I dont have MG and so I will defer any info on that to the members here who do, but I just wanted to encourage you to take it a day at a time as you readjust to your illness. Things can seem very overwhelming at first after a diagnosis, but as you begin to gain knowledge and correct treatment, so hopefully things will not seem so very desperate for you

you will find a lot of caring support here.

Cheri
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These forums are for mutual support and information sharing only. The forums are not a substitute for medical advice, diagnosis or treatment provided by a qualified health care provider. Always consult your doctor before trying anything you read here.
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Old 06-05-2007, 09:28 PM #2
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Hi Miss A -
I live in Minneapolis too so if you would like to talk directly I can give you my number...

Meanwhile my advice to you is to take it slow. It is a lot to absorb all at once. The magic of Myasthenia is that is different for everyone. It doesn't always get worse - mine did progress but has now improved some. There are a lot of different treatment options and it takes time for you and your doctor to sort out what will be best for you.

There are several websites dedicated to educating people about Myasthenia Gravis. You have probably already done a Google search. Don't believe everything you read because it is not the same for everyone! I read things that terrified me -I was more than a little scared .

I am glad you found this site . If you want to talk let me know and I will send you a private message with my number.
Gabrielle
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Old 06-05-2007, 09:37 PM #3
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Welcome to NT, Miss~A~!. I've had MG since the mid 70's. Back then it was considered to be a potentially fatal disease. I was turned down for insurance more than once. However, new treatments allow most myasthenics to live a fairly normal life. Of course, you have to learn that normal for you is now different. You may not progress much beyond what you now have. Or you may progress. Like Gabe said, we're all different. If you find yours is progressing, learn your new limitations. Stay active, but don't over-do it. Watch out for the triggers: getting too hot, getting too cold. Check out the info in the stickies at the top of the page. There are some medications we have to be careful of. They can exacerbate MG. You may find it helpful to print off a list of them and take it to your GP. And do educate yourself.
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