Diagnosed with BeriBeri/Wernicke's Encephalopathy... Help!
How are your liver enzymes? Alcohol can cause low B1 as you mentioned..... Docs always think we DSers drink a lot because our liver enzymes are sometimes high even years out from a DS. I don't think many of us drink all that much if at all. But I wonder if *some* of us are just super sensitive to alcohol? My only guess is the alcohol coupled with our weird anatomy might bring on a sudden drop in B1 and maybe too much exercise??? I have no idea. I hope they help you. Please keep us posted. Take care!!!!
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SO GLAD they figured this out!
My sister was diagnosed with the same syndrome 6 months ago. Totally different reasons- she was a longterm alcoholic and a disaster waiting to happen. That being said, the B1 deficiency came on very suddenly. Don't know what triggered the immediacy of the condition, only the longterm leadin of alcoholism and general poor nutrition. The sharp decline happened over 5 days' time.
Please make sure they are aggressively treating you! My sister will have lifelong effects of this syndrome - she will never completely return to normal physically or mentally. I don't want to scare you, as her history is very different from yours, but this conditon can be threatening to your quality of life longterm if not treated and monitored carefully.
My best wishes to you for a quick return to full health!
Mary Ann
My sister was diagnosed with the same syndrome 6 months ago. Totally different reasons- she was a longterm alcoholic and a disaster waiting to happen. That being said, the B1 deficiency came on very suddenly. Don't know what triggered the immediacy of the condition, only the longterm leadin of alcoholism and general poor nutrition. The sharp decline happened over 5 days' time.
Please make sure they are aggressively treating you! My sister will have lifelong effects of this syndrome - she will never completely return to normal physically or mentally. I don't want to scare you, as her history is very different from yours, but this conditon can be threatening to your quality of life longterm if not treated and monitored carefully.
My best wishes to you for a quick return to full health!
Mary Ann
Amy Farrah Fowler
on 8/26/11 3:19 am
on 8/26/11 3:19 am
I'm sorry, that has to be scary.
No great ideas, but wondering about vitamin changes? Like, even if you didn't change brands, is it possible the brand you have been taking changed their formulation?
If I couldn't see any changes on the label, I'd be inclined to call the vitamin company, and asked if they changed sources of the B1.
No great ideas, but wondering about vitamin changes? Like, even if you didn't change brands, is it possible the brand you have been taking changed their formulation?
If I couldn't see any changes on the label, I'd be inclined to call the vitamin company, and asked if they changed sources of the B1.
Oh Bean,
I am so sorry to hear that this has happened, I have no advice but just know that you are in my prayers.
Lynne
I am so sorry to hear that this has happened, I have no advice but just know that you are in my prayers.
Lynne
Highest 330, Surgery 297, Goal 140. Current 130
First Dr visit - 330 - BMI 58.4, Surgery - 297 BMI 52.6
01/24/2011 - 196 BMI 34.7 (ONEderland YEAH!!!),
...GeorgiaPink
08/10/2011 Reached GOAL Baby! 140 BMI 24.0 is my Angel.
08/24/2011- 139 BMI 23.8 One Year Anniversary
First Dr visit - 330 - BMI 58.4, Surgery - 297 BMI 52.6
01/24/2011 - 196 BMI 34.7 (ONEderland YEAH!!!),
...GeorgiaPink08/10/2011 Reached GOAL Baby! 140 BMI 24.0 is my Angel.
08/24/2011- 139 BMI 23.8 One Year Anniversary
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