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Old 05-27-2009, 09:04 AM   #1
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CRAIG2000 HB User
Has anyone found anything that works. or any advice?

Hello,
My name is Craig. I live in Ontario. I was diagnosed with MG in october of 2008. I am 28 years old. They told me I needed thymus gland removed. So I did that in January of this year. I was on Mestinon but it was giving me bad side effects so I stopped taking them. I just reasantly went to neurolgist for follow up and they want to put me on prednisone which looks pretty serious with all the side effects. So far nothing has changed and I feel the same. Muscles are always sore. Strength is not there for anything. Has anyone found anything that works. or any advice?
Thank you

 
Old 05-30-2009, 06:07 PM   #2
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neverdull HB User
Re: Has anyone found anything that works. or any advice?

Quote:
Originally Posted by CRAIG2000 View Post
Muscles are always sore. Strength is not there for anything. Has anyone found anything that works. or any advice?
Thank you
Dear Craig - I'm not as familiar with your specific illness, but I've been on Prednisone for 14 years. Frankly, there's nothing else as good out there despite the side effects. I've been on it for some sort of inflammatory myopathy they can't figure out yet, but my diagnosis is IBM, which makes no sense with the inflammation and muscle soreness. Prednisone will help with what I call flares of more active muscle disease and it will help instantly with improvement in the weakness. It will also help with the aches and pains. I despise being on anything more than 10 mg. a day, but I've been on as much as 40 and swelled up like a giant basketball and had now legendary mood swings. Without Prednisone, I don't know how the situation would ever have been brought under control. I just try to get my docs to wean me back down to a lower dose as soon as they feel I can handle it. My personal experience leads me to suggest a low inflammation diet (there are books on this). I use fish oil and Borage oil too, which work together to fight inflammation, but get a book or-and talk to your doctor before messing with such things yourself. I cleared it with my doctor. These changes in your diet may help enable you to use less Prednisone to stay stable.
Hope this helps.
Laura

 
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