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Old 06-24-2009, 05:43 PM #11
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erinhermes erinhermes is offline
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Smile Hi AD404!

Hello again! You are truly wonderful sibling to be so involved with your sis! I hope she decides to join this site!

Big hugs!
Erin









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Originally Posted by AD404 View Post
it is my sister who has the MG I know that she is on Mestinon and goes for treatments . Right now she is battling with insurance company . I really want her to join your group of wonderful people. God bless you all . I think you are all amazing people
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Old 06-25-2009, 08:07 AM #12
Joanmarie63 Joanmarie63 is offline
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Cool

I agree with Erin and hope she decides to join us but remember as a family member this is a great site for YOU as well, here you will learn what your sister is feeling and how to help her cope as well as a place for you to learn and understand your own feelings.
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Old 06-25-2009, 10:12 PM #13
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Your sister is very lucky to have a family member willing to get educated about her disease. That will help her more than you can know!

I have taken prednisone with no result. Immuran helped me more, it seemed. It will depend on several factors for your sister, best evaluated by her doctor - as long as the doctor is experienced in MG! Sometimes the medication is trial and error. What works well for one doesn't always work for another.

We'd welcome your sis with open arms and gladly answer any and all questions BOTH of you may have. I'm glad you've found us. This site has been just awesome for me, and I've had MG for 14 years (probably longer)! Wish I would have found it way earlier than I did.
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Old 06-28-2009, 08:05 PM #14
justdeb justdeb is offline
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Hi, is good to see a family member who is trying to help instead of malign the person with MG. So many folks have just the opposite, sadly.
Being informed is wonderful.
As to the medications that are commonly used, there is a website MGFA that will tell you all about the mainstays for treating mg. Why each one is used or not used. The possible good vs bad effects of each.
As to what treatments each of us gets, it is very much individualized. Some get by with mestinon alone. Some get by with a combo. And then other hard headed MGers, such as myself like to have a nice salad bar type variety of medications/treatments to get by. sigh. LOL I have been on pred for about 5 years now. 60 mg a day. And have all the bad side effects to show for it. We have tried numerous times to wean off of it, but my body is very resitstant to giving it up. Currently have been at 50mg for a bit over a month now. ACtually doing OK. Of course we increased the IVIG from biweekly to weekly to help with the weaning.
So again, keep investigating things. Learn as much as you can so you can help educate your family and sis in the MG journey that is just beginning!
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