Thread: Guillan Barre
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Old Wed Jan 16, 2019, 09:20 AM
Marlene Marlene is offline
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Join Date: Oct 2006
Location: Springfield, VA
Posts: 1,343
support resource for neuropathies

In case you feel up to it, here's a link to a neuropathy board you may find helpful. Everyone on this board is dealing with some form of CNS/peripheral nerve damage from various causes...autoimmune, toxicity, nutritional, accidents, diabetes, hereditary, etc. It's been more active in the past but there's a wealth of knowledge stored there. People try many approaches to address the pain and healing. There's not a one size fits all approach.

This was a huge quality of life issue for John too. It can get better and you can heal but it is a slow process. Even after all these years, he still has some nerve damage but no where near the severity it was back in the early months/year after treatment.

https://www.neurotalk.org/forum20/
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Marlene, wife to John DX w/SAA April 2002, Stable partial remission; Treated with High Dose Cytoxan, Johns Hopkins, June 2002. Final phlebotomy 11/2016. As of January 2017, FE is 233, HGB 11.7, WBC 5.1/ANC 4.0, Plts 146K.
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