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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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Wow! This is such a weird disease!
This is such a freaky disease! It effects EVERYONE in such different ways ; my breathing NEVER tanked until the very end, right b/4 my crisis........My main problems were extreme fatigue (very, very weak), double vision, etc, until the very end. Granted, I do have panic attacks that effect my breathing, but xanax really helps with that! I'm just sooooo very thankful that I can now swallow, eat, walk, work and take care of my family ! Does your neuro have any idea why he reduction of steroids effect you like that? I was up to 80 mg. a few months ago, now down to 20 daily. There are days when getting off the sofa is simply not in the cards, but other days I feel I can conquer the world - such is MG . I am very worried about my eyes - cataracts/glaucoma are a real concern for me. I will call my doc and schedule a appt.for the next couple of days!
When you get some time, let me know how you are doing!
Take care!
Erin
Quote:
Originally Posted by GodDreamer2007
Erin, Every single time they lower my Prednisone, my breathing tanks,and my adrenals don't want to wake up. I become very weak, and muscle cramps are beyond describable, the pain can be unbearable. I end up with a fever, and basically curl up and am so tired, I feel comatosed (sp?).
Yesterday, I met with a new Neuro who is working with my old neuro, and she is an Myasthenia Expert, she said that right now they don't dare lower my prednisone, but will reevaluate that in a couple of months. They finally got me somewhat stable, and want me that way for a while.(  um me too) I don't like choking everytime I eat. Eating can be a chore when choking all the time.
This is such a complicated disease.
Your eye pressure jumping up ten points, is a concern, make sure you have them check them often. You don't want to end up with Cataracts. I've been blessed in that way, mine have stayed right around 16-18. I was told that if you're going to have a problem with your eyes because of prednisone it will turn up with in the first few months of starting, so please be careful to get them check, I know you will, it's the "Mom" in me, if I don't say something, I'll be worrying about you during the night..sorry.
Love Lizzie
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Erin
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