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