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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 Alice!
Hello again!
It was my neuro's dx - I recognize that handwriting ANYWHERE! LOL!
I was very, very sick before I was dx'ed - in fact, MG almost took my life. I had several occasions where I was unable to breathe - after 8 days in the ICU, I was a NEW woman!
I did ask Dr. I about the dx and he was (for once) very PC about the whole thing - he did acknowledge that I have so called "acute" MG, but urged me to keep focusing on remission. I truly love that man!
I have been on between 80 and 40 pred for over a yr now with 2000 mgs of cellcept added. Needless to say, it has wreaked h&ll on my body! I am waaaaay overweight and just felt miserable, so he took me all the way down to 20 mgs of pred (said @ this point it was hurting my body more than it was helping) with 3 days of IV IG thrown in for good measure. It is great to have the power port - all of my veins were collapsing......plus to be quite frank, I loathe blood work - I used to look like a pin cushion or junkie but now they access my port and I am good to go.
Again, regardless of my dx - I KNOW that I am going to go into REMISSION! I had my thymus removed 17 months ago and am doing everything possible in order to achieve that goal!
I have fought too hard and too long to give up now! I have also found that a positive attitude makes all the difference!
How are YOU feeling?
Big hugs!
Erin
Quote:
Originally Posted by alice md
Erin,
Your doc. sounds like a great guy, why don't you check it with him?
residents can sometimes be very sloppy in what they write in patient's charts.
in Osserman's time, before there was any effective immunosupressive treatment or good respiratory support options, there was a relatively rare entitiy of actue fulminant MG.
but, since then medicine has fortunatley made significant advances.
and any how, you don't sound any where near that...
and I am quite sure that with time, you and your doc, will find the best way to manage your illness.
and I think it is important that he knows about your fears and concerns.
alice
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Erin
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