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About Me
Dyanna
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About Me
I have been diagnosed since 12/07.
I have been diagnosed since 12/07.
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Recent Activity
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Journal
This entry is private
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Hugbook
Hug
Thinking of you!
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Flower
I'm glad that you had a good day yesterday. Hopefully today will be as good, if not better than yesterday.
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Hug
I meant to say I downloaded the book from your link and I am getting it printed out by my hubbie. So I will be able to read it with great interest. Thank you for that link it sounds like I might actually learn more about my MG than any doctor can tell me.
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Present
I would like to wish you and your family also a Merry Christmas which is filled with the Christmas spirit. May the new year bring health, happiness and much laughter into your lives.
Flower
Dyanna, I did give my sister a hug from you. I have just returned from a trip to visit her. Her recovery has been a Christmas miracle. She has been able to eat again and the feeding tube has been removed. They hope to reconnect her colon in a couple of months (had to temporarily remove an abscessed portion and is using a chlostomy bag). Don't panic ... this is not a normal occurance for an MG patient. We agree ... MG is a terrible affliction and possibly the worse imaginable since it seems to have no boundaries and each case is different and treatments have to be tailored to each individual. The upside is that most patients can find the path to a good result and a fulfilling life. It takes patience, prayer, good doctors and lots of support ... but it CAN be reached. I'll keep you in my thoughts and prayers that you will find a path that works for you. Sending positive thoughts your way that you WILL get to hold that grandbaby! P.S. My sister even started cooking again ... making her famous banana bread for her grandchildren!!
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Photos
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Goals
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Support Groups
Close Myasthenia Gravis
I am new MG patient diagnosed for about a year.
Treatments
- IVIG Not Working
- Seemed to make muscle weakness much worse and started to occur much sooner in day than previous to receiving treatment 5-days of treatment after crisis and hospitalization. Not successful, caused heartburn.
- Mestinon Not Working
- Doesn't do a darn thing but cause severe diarrehea which reslved itself after taking 6 mg daily of Robinul that drug is a GOD SEND!
- Azathioprine Not Working
- Currently not working dr says have to wait 46 weeks to see effects however after taking for a while shouldnt ya see some effects that are positive?
- Plasmapheresis Considering
- Trying to get doctor to try this as nothing else has worked
- Thymectomy Considering
- Do not have thymoma or so told from CT scan.
