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Living with Neuropathy - Welcome to the group
Neuropathy | Last Active: 50 minutes ago | Replies (6023)Comment receiving replies
Ted. My wife, Cheryl, has neuropathy. It is a result of POEMS Syndrome. She was misdiagnosed in 2006, CIDP. Diagnosed correctly in 2009. She is in pain most days. Always looking for something new.
Replies to "Ted. My wife, Cheryl, has neuropathy. It is a result of POEMS Syndrome. She was misdiagnosed..."
takjack, Poems Syndrome seems to have a thiamine deficiency component. Thiamine requires magnesium to become bioactive. Fat soluble thiamine such as Benfotiamine passes through the brain/blood barrier more efficiently than water soluble forms. Please review these links:
https://pubmed.ncbi.nlm.nih.gov/22504253/
https://www.jstage.jst.go.jp/article/internalmedicine1992/34/7/34_7_674/_pdf
https://nootropicsexpert.com/vitamin-b1-thiamine/
https://www.krispin.com/magnes.html
@takjack
Ted, I am sorry that your wife has what sounds like a terribly debilitating illness. Just curious, what sorts of things has Cheryl done and is she doing now to deal with or cope with her neuropathic pain? Also, does she have severe fatigue, and has that progressed? Just looking to compare notes. The pain and fatigue experienced by my wife, who got PN in 2014 from chemo, have progressed dramatically in the last 2 years. Best, Hank
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Hello @takjack, Welcome to Connect. I know it must be hard for both you and your wife when she's in pain and nothing seems to help with the POEMs induced neuropathy. One of the things that helped me was just learning as much as I can about my health conditions so that I could ask better questions of my primary care doctors. I've also learned the hard way to write my questions on a list to take with me so I won't forget. I'm not sure if you have seen these pages but thought they may be helpful.
An update on the diagnosis and management of the polyneuropathy of POEMS syndrome:
- https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6343023/
Foundation for Peripheral Neuropathy - POEMS - Treatment & Therapy:
- https://www.foundationforpn.org/what-is-peripheral-neuropathy/causes/autoimmune-disease/poems/
POEMS syndrome care at Mayo Clinic:
- https://www.mayoclinic.org/diseases-conditions/poems-syndrome/care-at-mayo-clinic/mac-20352681
You may also be interested in this Mayo Clinic Newsfeed page on POEMS which has a link to a clinical trial that may still be available.
- POEMS: An expertise in the rare leads to a rare opportunity: https://connect.mayoclinic.org/page/hematology/newsfeed-post/poems-an-expertise-in-the-rare-leads-to-a-rare-opportunity/
Has your wife found anything that helps with the neuropathic pain?