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Myasthenia Gravis For support and discussions on Myasthenia Gravis, Congenital Myasthenic Syndromes and LEMS. |
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10-26-2008, 05:31 PM | #1 | ||
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Hi Erin,
Just wanted you to know I had not forgotten this, I'm plugging away at it while in the hospital here. I'll post it to LiveJournal when I have it completed, I'll be posting my recent crisis story there as well as soon as I have an air card for the laptop my brother loaned me. Brian. |
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10-26-2008, 08:20 PM | #2 | |||
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Oh, Brian, I am so sorry to hear about your crisis......What happened? What meds are you on? Do you have a good neuro?Are you on IV IG or plasmaphoresis? Do you have family around to help you cope? I know how scary hospitals can be..........Hang in there
If you need to reach me, please do so. I'll be looking for your posts...I am available 24/7. I can't wait to see your story. I know it will touch others and spread MG awareness....... Take care! ERin Quote:
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Erin . |
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10-29-2008, 01:16 PM | #3 | ||
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I'm out of hospital now (finally, almost 3 weeks in quarantine is pretty miserable.)
As mentioned somewhere here, I had radiation therapy for the thymoma that I had. Due to the location, this burned my chest, back, esophagus and lungs. It is a natural and expected side effect of radiation therapy to the upper chest. The problem is I caught a cold during therapy. The burnt lungs collapsed some bronchial tubes and the cold settled in those collapsed areas developing into pneumonia. Pneumonia is a very severe aggravator of MG and I was unable to get nutrition in to fight it off. While in hospital I picked up some MRSA in my lungs which resulted in my quarantine and extended stay. The infectious disease specialist wanted me to get it all out before letting me leave where I had come in with such severe pneumonia. I have a great neuro, as soon as he saw me he knew what was going on and got the ball rolling to fixing my condition. I didn't even have to tell him anything about what was happening, he asked if I had a cold recently and then went on with various questions that he seemed to already know the answers to, I just needed to confirm. He setup plasmaphoresis right away and that resolved almost all of the MG issues. They just had to deal with the pneumonia and lung damage after that. I'm on quite a pharmacy of drugs here right now... they upped my mestinon from 60mg x3 to 90. I'm on a short term run of prednisone for the lung damage and a heavy duty antibiotic for the MRSA. Quote:
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10-29-2008, 03:04 PM | #4 | ||
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Member
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Hi Erin,
My story has now been posted to my livejournal. It is public and the url is brennan068 . livejournal . com (without the spaces obviously). Feel free to glean whatever you think will help anybody else out of it. I've posted both a general "Myasthenia Gravis and me" which tells of my initial experience as well as a very long two part post of my recent crisis. Cheers, Brian. |
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