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Old Sat May 28, 2016, 03:46 AM
rainbows and glitter rainbows and glitter is offline
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Join Date: Nov 2012
Location: Alaska
Posts: 11
Working my self to death with gvhd

I have GVHD, the skin on my legs is sore and splitting open, I have horrible neuropathy, probably from the prograf I am back on. I take 5mg a day. I have uncontrollable muscle spasms despite being on tizanidine, duloxetine, and lyrica. I am also 31 and a bartender in a very busy bar. I make good money, even though now I can only handle three nights a week. I can't ask for more time off or less days they will just let me go. I never got help from any social worker or doctor to receive any kind of help or assistance. I have to work. Please, is there anything to help with the neuropathy? And has anyone experienced GVHD in your nerves? Sometimes I get pangs of pain in my head too.. I'm afraid I have GVHD of the nerves...I have it in my skin, muscle tightening, in my eyes, and mucous cells. Is there anything that can be done? I can't lose my job.
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27 year old female diagnosed MDS RCUD 2012, GATA2, multiple carcinomas in-situ, SCT 10/03/2013 @NIH, chronic GVHD starting 11/2015
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