Myasthenia Gravis For support and discussions on Myasthenia Gravis, Congenital Myasthenic Syndromes and LEMS.


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Old 01-06-2008, 11:42 AM #6
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bobcatsrule bobcatsrule is offline
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Join Date: Jan 2008
Location: Athens, GA
Posts: 77
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Quote:
Originally Posted by cynwldkat View Post
It's been almost a year now since my sister was diagnosed with MG. She nearly died with a staff infection which caused her muscles to stop working her lungs and she had to be put on a ventilator for nearly 2 weeks. Finally she got rid of the staff infection and things were looking up. Then she got a kidney infection and went to the hospital ER. While in the ER she fell and broke her hip. She had to have a partial hip replacement. Now the Dr.s are saying her bones have become "soft" from the medications she is having to take for the MG. Has anyone here heard of anything like this? I am trying so very hard to stay positive for her and she is so frightened. Any information would be greatly appreciated!!

One last question...does it ever get better or is this just the way her life will be from now on??
i was just diagnosed with myasthenia a year ago too. And though i have not had as many problems as your sister it almost seems to be universal (from what I'm reading in the forum) that the first year is the WORST! Can't speak for following years but hopefully it does get better. she is lucky to have a sister who cares so much. I am basicly on my own in this and it has only been recently that my new chruch family has steped in and been my champions of emotional support.

I don't have all the answers to you questions, as my neuro and i are only still talking about some of the therapies that you mentioned. But i can vouch for the worth of a good support network.

there are a lot of things that i have done research on in the past few weeks trying to work with my neuro to decide what therapies would be most effective/that i am willing to endure. I have heard that predinsone does have a LOT of nasty side effects, including bone thinning. unless your sister has been tried on it with no effect, i would suggest the drug that I'm currently using MESTINON. I have found that it works GREAT for about a year but then starts to require much higher doses (about every 3 to 6 months and then eventually the sideeffects out weight the pros). BUT it can be a life line as other theripies are started. Espcially when the drug is first started.

i have myasthenia that went from occular only to generalized in the past year. it can be scary but with the right neuro and treatments normal life can come much closer to being achieved. you might want to suggest to her that she has the antibody to the MuSK receptors. This type of knowledge can be very valuable in figuring out what treatment options might work. That is the point that my neruo and I are at now.

Good luck to both your sister and yourself!
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