Thread: Guillan Barre
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Old Wed Jan 9, 2019, 06:22 PM
DanL DanL is offline
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Join Date: Dec 2010
Location: Denver, CO
Posts: 580
Guillan Barre

I have had a very interesting transplant journey and have recently been diagnosed with Guillan Barre Syndrome. No vaccines or obvious food poisoning associated with it, but I did have a pretty bad cold several months back. I am wondering if anybody else was hit with this fun complication.

My doctor said they see about 2 cases per year out of 400 transplants completed each year, so it is pretty darned uncommon. We caught this relatively early as i am not completely paralyzed, but I have neuropathy from the shoulders down and all the way across. I can barely feel anything when touched, and have virtually no reflexes from the hips down, which makes walking challenging, but not impossible.

I was treated with 5 days of IVIG, which seems to be the standard, and I am being kept on immune suppression since this is basically an auto-immune disease not too different from GVHD in what it does. It basically demyelenates the axons in your central nervous system, so your nerves don't fire properly. If caught late, it can lead to severe paralysis, intubation, inability to speak, eat, cough, etc.

Anybody else out there have this experience?

Dan
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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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