Thread: Guillan Barre
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Old Sat Jan 12, 2019, 05:08 PM
DanL DanL is offline
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Join Date: Dec 2010
Location: Denver, CO
Posts: 590
@neil, thanks for the catch on the misspelling, it was a typo. The incidence rate is difficult as they sometimes have a hard time differentiating and categorizing CNS GvHD vs Guillain Barre, so it is possible that the rate is higher or lower. I did notice a study that used an MS drug to treat CNS GvHD, wondering if it could be used to treat GBS as well??

@hopeful, as always thanks for the good thoughts. The doctors are really reluctant to say anything about duration or expectations of disease progression or improvement as it is so relatively uncommon. I am going in for an EMG in a little over a week to see if we can get a better understanding of prognosis going forward.
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MDS RCMD w/grade 2-3 fibrosis. Allo-MUD Feb 26, 2014. Relapsed August 2014. Free and clear of MDS since November 2014 after treatment with Vidaza and Rituxan. Experiencing autoimmune attack on CNS thought to be GVHD, some gut, skin and ocular cGVHD. Neuropathy over 80% of body.
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