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Senior Member
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Join Date: Jul 2008
Location: San Antonio
Posts: 1,471
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Senior Member
Join Date: Jul 2008
Location: San Antonio
Posts: 1,471
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Hi Becky!
Hi Becky! I am still a "newbie" regarding MG - I was diagnosed March 6th and had my thymus removed April 22 of last year.......I was doing well, but have had constant infections (tooth abcesses, pneumonia and whooping cough_ that I feel have halted my progress thus far. I was down to 15 mgs a day of Pred, but recently had another rround of IV IG and my neuro bumped my pred back to 60 until AFTER my next round of IV IG........Actually I'm going in monthly from here on out until my pred is reduced to 20 mgs, but that OK with me cuz' I do love how it makes me feel! Hate the PICC lines though!
I was weak for years and spoke with a nasally voice and then became really ill after a trip to Belize. When Mike and I returned home, we both had really high fevers that no amount of meds would bring down and then my eyes went "wonky"........it progressed from there (this was in Oct) until I was too weak to do anything - anything - even breathe! That's when I was diagnosed and spent some time in the ICU while they built me back up.
MG scared the heck out of me until I found this site! There are so many wonderful, caring, smart people that have helped alleviate my fears, so you have found the RIGHT site!
I feel GREAT @ 60 mgs! My face is cushionoid and I am a lot heavier, but then again I can work, walk, talk, etc and for that I am extremely grateful!
MG can be a lonely disease - since there are so few of us.......
Now, tell me about yourself? When were you diagnosed? How are you today? Are you OK? You recently had an aneurysm? That must have been terrifying!
Do you have a good neuro? A support group? Family to help on your bad days? My family is great for the most part, but a few of them have had trouble since my diagnosis.......they are still in denial........
Can't wait to hear from you!
Erin
Quote:
Originally Posted by ras1256
I am new to chat, but been dealing with MG for awhile. Just wondering if you have been told about thymectomy. I had one and steadily improved until I was off all meds for the last year and doing almost as much as before my diagnosis. I am currently flared apparently having something to do with a procedure I just went through for an aneurysm. I've read several of the posts here and was just wondering about you.
Hope to hear from you soon. I need to compare notes with as many MG's as possible.
Becky
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Erin
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