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peskiann Asked December 2019

I would like to know if anyone out there has Wernicke encephalopathy? I would like to know your treatments and how you cope.

I was diagnosed about 1.5 years ago. I am in Mexico and I never received the Thiamine DM - just oral medication. I just found out about benfotiamine and started taking that about a month ago. That coupled with physical therapy has given me some improvement, however, I feel there is a treatment out there that has not been offered to me. I DO NOT feel that the doctors here know about this condition other than how to diagnose it. I went to treatment for alcohol over a year ago and the doctor there simply gave me 100 mg. of oral thiamine which was not the proper initial dose. I may be screwed as far as treatment and the passage of time but I do not want to give up. The disease is telling me otherwise but I feel I can improve.

lealonnie1 Dec 2019
I work as a front desk receptionist at a Memory Care community. We just admitted a rather youngish woman (around 64) who was diagnosed with Wernicke Encephalopathy. I speak with her brother quite often who says he doesn't expect her to be here long because she's making progress with physical & occupational therapy. I don't know what supplements she takes, however, or medications, for that matter, as I am not privy to that information....sorry. He wants to transfer her to Assisted Living in a few months but is worried that she will go back to drinking & smoking; which she CAN do in AL but CANNOT do in a locked Memory Care facility.

Here is a link to some info about the condition: https://academic.oup.com/alcalc/article/41/2/151/134954

Best of luck!

JoAnn29 Dec 2019
https://www.agingcare.com/questions/wernicke-encephalopathy-treatment-454145.htm

This question has been asked before. Sorry, you didn't really get any replies. I guess this desease is fairly rare.

We are actually a forum of Caregivers sharing experiences. We r from all over the Country, Canada, UK and other countries. We are not experts. And looks like, for now, there is no one who has shared your experience. Sorry.

Have u tried to find a forum or blog pertaining to ur problem?

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mstrbill Dec 2019
Don't give up. Stick to that. Never touch alcohol again. Ever. Keep taking the B1, also B complex can be helpful. Do as much physical therapy and mental stimulation as you can. Keep active and be patient, progress can be slow. Stay positive. Best wishes.
peskiann Dec 2019
Thank you for your response. Were you diagnosed with this disease or do you know anyone who has been?

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