Won't Stop losing

I had my RNY in 2010 I started at 300 lbs and now weigh 117 lb. I can barely eat anything, have very low White Blood Cells, and in 2013 started getting Adult Onset Epilepsy. I am VERY religious about taking my vitamins, Iron,, calcium, etc. My Bariatric surgeon says "I'm just a surgeon and have NO idea what is going on". I have been to a liver doctor/Internist and now Neurologist as I am having "Post Bariatric encephalopathy"

I go in Monday for a week of testing because no one knows what to do. Has anyone had this? I am 5'3 117 lb. is NOT underweight for me, but having seizures and multiple sclerosis symptoms is not normal. I have no more muscle tone so you can see every vertebrae and ribs and bones. I never "regained" any weight because 1) I can barely ear and 2) I eat as I'm supposed to, no junk food,, sugar or crap.

PS: I've had 6 surgeries my bariatric surgeon said that there is nothing wrong with my RNY. I had my Gallbladder removed 7 years ago, and had stents put in for Sphincter of Oddi disease.

Just checking if anyone else has ever had this -this far out.

Warmly,

Jackie

I hope the week of testing can determine what is going on. If not, I would go to another bariatric center, possibly the Cleveland Clinic, to see if someone else can figure out what is going on. I hope you get some answers soon.

Can your RNY be reversed?

I looked up the encephalopathy and is it "Wernicke Encephalopathy"? It looks like that is a result of thiamine deficiency.

I hope you get answers! Just like being over weight has so many issues so does being under weight. Even if according to a chart you're not under weight, your body might not agree with a chart. If the testing doesn't show anything I would definitely see a bariatric specialist again! Good luck and I hope it gets figured out ASAP!

I'm very close to underweight and I don't have any of the issues the OP is experiencing; however, I am diligent about taking vitamins and my lab work is very good.

While that's great for you, you are not quite one year out it seems. Your situation can hardly be compared to the OP's as a measuring stick. Plenty of post ops have great EWL and "perfect labs" until year 3 or 4. Then things can change or keep on going in the right direction :)

What vitamins and supplements do you take, and how often? Are you getting enough Vitamin B1 (aka thiamine)? And have you had COMPLETE labs drawn recently to check your levels? (Use Julie's list of recommended blood tests post-WLS.)

What Liz said. There have been cases where this has been reversed as Thiamin levels are built back up. It's a process, but it's doable. How are your labs?

This a just a link to my google search but you'll find a lot of information right here:

https://www.google.com/search?source=hp&ei=S6jkWs-xK8uSjwOuy qSwBA&q=post+bariatric+encephalopathy&oq=post+bariatric+ence &gs_l=psy-ab.1.0.33i160k1.1395.5467.0.8050.21.20.0.0.0.0.362 .3604.0j8j3j5.16.0....0...1.1.64.psy-ab..5.16.3587...0j0i131 k1j0i22i30k1.0.M5XTzwzaCns


I would think if you've been diagnosed they would have talked with you about what's causing this. It happens for other reasons than Thiamin deficiency (it's one of the scariest reasons not to drink alcohol much at all post WLS). Do you drink at all? What did your provider say was the cause?

If you have labs and feel ok about posting them there are many who know much more than I do about this stuff that might be able to point out possible issues.

Truly sorry you are dealing with this. If I were in your situation I'd find an expert on this condition asap since it appears to be responsive to some changes in vitamins and such. Good luck.