Thread: Guillan Barre
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Old Tue Jan 15, 2019, 11:17 PM
DanL DanL is offline
Join Date: Dec 2010
Location: Denver, CO
Posts: 585
One of the reasons that I have been an active member of this forum is that I have always found support and great information from the members. Once again, thank you all for the support.

Being diagnosed with this illness has been very interesting to me that I have been through a lot, and this is the first time that I have experienced frustration and some element of depression. Because the overall feeling is like having severe neuropathy head to toe, it really takes the energy out of me and means that I am having to really lower my expectations of myself on a daily basis, which is hard for me as I like to go until I drop. It seems that I drop quickly ugh.

This event is the challenge that I wasn't prepared for, so it seems like it is taking a while to regain the full blown positive attitude that I rely on.
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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