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Old 11-27-2009, 11:01 PM #1
DawnK DawnK is offline
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Default Hi Again

It has been years since I was here...and I need you guys. I am on Pred and Imuran for the thirteen months and have started tapering the pred and am having MG symptoms--ptosis and diplopia. I am just so sick and tired of being sick and tired. I don't want to be on the pred anymore-I miss my body and my face and I am just not sure all the side effects of immunosuppressants are any better than dealing with MG fatigue and symptoms. I'm supposed to call neuro if my symptoms get worse but I don't want to bump up the pred again...now on 30 mg even days and 10 mg odd days. I've had MG for 40 years, diagnosed at age 11. A long time and have managed my disease so well until last year. Oh, I am just so tired. I just need some encouragement!
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Old 11-27-2009, 11:17 PM #2
Brennan068 Brennan068 is offline
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Hi Dawn. I totally understand the sick and tired of being sick and tired. Vent. Let it out, rant and roar . I don't know what encouragement I can really give except a virtual hug... so
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Old 11-27-2009, 11:28 PM #3
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Hi Dawn,
welcome back, just unfortunate its under these circumstances.

I know what you mean by being sick and tired of being sick and tired. Its frustrating!!!

Are you on mestinon?
I do really understand not wanting to ring your neuro, I have been there before, but if you are getting worse, better to sort it out sooner rather than later.

I can't imagine how frustrating it must be to have been able to manage your mg so well, and now having to cope with all your symptoms. Like Brennan said, vent, its a great place to do it, we all know where you are comming from!!!!
Everyone here is wonderful, supporting and helpful, they've helped me out more than once.
take care
Kate
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Old 12-01-2009, 10:45 AM #4
rezmommy rezmommy is offline
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Dawn,
I understand your frustration. It is best to just let it fly. This forum is an excellent for vents whenever you need to. I know what you mean about wanting your face and body back. We had my mother's birthday party last week and I was just looking at some photos, I did not recognize myself. Somebdody should have told me that I have turned into the pillsbury doughgirl. I am on a taper now so hopefully I can start to get some of this weight off soon.
You have managed this disease for forty years, my hat is off to you. I hope that you get off the pred and start to feel better soon.
Take care ~ Melanie
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