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!!!!

 Liver enzymes are normal, both below 20.  Mine have never really been elevated (never above 40).  Thanks for the thought though!

No ideas, but wishing you the best!

Bean,
No real ideas, but hope you're feeling better and your doctors figure it all out. Swinging my cats for you. Keep us updated.

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

 So glad to hear the sudden onset isn't unheard of.  I am terrified...  Thank you for sharing this info with me, I will definitely amp up my aggression on treatment.

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.

 Great idea!  I'm going to have my hubby check into this, the bottles are all back home, I just have my med organizer here with me.

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'm so sorry. I hope you are getting injections/infusions and it is helping. Praying for you...