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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.

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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!
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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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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.
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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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