Diagnosed with BeriBeri/Wernicke's Encephalopathy... Help!

Bean, I have no advice for you, just hugs and wishes that you make a speedy and full recovery!

I tried to PM this to you, but your account was blocked so that I couldn't.

I'm no expert on this stuff AT ALL, but I did a little research out of curiosity and read that glucose/carb loading can cause encephalopathy symptoms acutely in someone with a Thiamine deficiency. The common situation mentioned would be a malnourished alcoholic in the ER, being given IV glucose or a large carby meal...but bariatric surgery was also mentioned as a well-known cause of the malnutrition (not that this is new info for us). I know that this does not address your B1 levels being normal on recent labs, but have you recently eaten more carbs than normal? Just a thought as far as what might have set you off.

The article I was reading was from emedicine.com

http://emedicine.medscape.com/article/794583-overview

I'm a PA, and I have a free account to view emedicine articles. I think I remember that you are a provider of some sort also, so you should be able to see it. If you do primary care medicine, it may be stuff you already know, anyhow. I practice in a subspeialty, so some of it was long-forgotten info for me!

Also, have your symptoms improved as they have given you Thiamine? The prognosis is supposedly directly related to the amount of early improvement once Thiamine is supplemented.

Sorry this is happening to you! Will be praying for you!

Karen

Unfortunately, I had to delete this post due to privacy concerns.

 Quick update- thanks for the prayers and swining critters.  They ae NOT treating me yet, this is something I a going round and round with them abiut and am not happy over.  The only thing they have been giving me is fluids...  I've even spoken to Dr. E about this (even though its not really his deal) and he is LIVID they aren't treating this aggresively.  He wants to rip me out of this podunk place and admit me to INOVA, which I may very well do...  They are "monitoring me" and attempting to "manage my hypotension" while they wait on these freaking lab results.  Meanwhile, the symptoms are still present and I am on my last nerve with them.  Thanks for all the thoughts and links.  I have some reading ahead of me tonight.  

If you can get to Fairfax let me know. PMing my cell phone number to you.

--gina

Unfortunately, I had to delete this post due to privacy concerns.

-from Karen's article

Have they given you magnesium?

As previously stated, patients with Wernicke encephalopathy are likely hypomagnesemic and should be treated empirically with parenteral magnesium sulfate, as they may be unresponsive to parenteral thiamine in the presence of hypomagnesemia. After correction of hypomagnesemia in conjunction with thiamine repletion, the blood transketolase activity can return to normal and clearing of the clinical signs of Wernicke encephalopathy may occur


dont want dextrose-

In addition, the administration of dextrose in the setting of thiamine deficiency can be harmful because glucose oxidation is a thiamine-intensive process that may drive the insufficient circulating vitamin B-1 intracellularly, thereby precipitating neurologic injury.

hopefully hubby is advocating for you and you are changing hospitals.  hugs, Jenny

There is no harm in giving you Thiamine (again, based on my recent reading). Why won't they give it to you? That is BS!

Karen

Unfortunately, I had to delete this post due to privacy concerns.

Thinking of you Bean.  This has to be so frightening -- thank goodness you have your  hubby there.  As we all know, having an advocate (especially when we're in and out of it) is so important.  I can't offer any advice, but am sending you good thoughts and the best vibes that this gets under control ASAP.