Discussions By Condition: I cannot get a diagnosis.

Increased liver size, normal liver enzymes, pretty bad overall health

Posted In: I cannot get a diagnosis. 0 Replies
  • Posted By: Anonymous
  • June 1, 2010
  • 05:38 PM

I need help. Both my mental and physical states have been deteriorating over the past five or so years.

I have this forum to thank for the B12 thread that basically gave me a whole new perspective on my life and more or less saved me.

This will be a long text, so I'll try to give a brief description of my problems first, and try to ellaborate further on.

I'm not a native English speaker but I'll do my best.

I can provide mri and ct scan images, exact numbers from the blood tests and basically anything anyone here might suggest.

Short version:

What I'm currently facing:

1) Fatigue, over-sleeping, being unable to focus

In the autumn of 2009 my blood tests indicated a low b12 value (it was around 160 I believe). The doctors here didn't pay any attention to that, saying it wasn't that important.

I got myself tested because I wasn't able to run anymore. My legs wouldn't listen to me and I grew really tired really fast. I slept more than 12 hours each day. I had been running for about 3-4 months. I was unable to work. I am a computer programmer and my job requires me to stay really focused. Because of my condition I work from home now, but I was still unable to get anything done.

I am overweight and I need to run to keep my shape. I've had huge variations in weight over the past years.

B12 shots fixed a good part of that. My first b12 shot was like turning on the light in a really really dark room. I can actually get some work done now.

2) Stabbing pain when running in a small area that I understand coresponds to the right liver lobe. The area is around two fingertips wide and is directly under the rib cage.

Nobody thought it had anything to do with the liver since blood tests reavealed perfect liver enzymes. I retested and they are still in the correct ranges.

Last year I was able to run. I stopped running in the autumn, decided to take a break to replenish my b12 supplies. In january I went to the gym for a month. It was over tiring for me. Spring came, I went out for a light jog, the pain was really really bad. I sometimes felt the pain when running last year, but never this bad or this fast. I used to run for more than 25 minutes, now I had to stop after 5 minutes.

Since the enzymes were that good, I decided to do a CT scan. It indicated that
a) my liver size was increased - to quote the doctor : from the size of it it would indicate a condition similar to the recovery after a viral hepatitis - he suggested it looked like I just had hepatitis A. The liver is close to the iliac crest (I understand that's big, I can provide the images).

b) based on the liver density he deduced I have a fatty liver. I've gained some weight since I was unable to run, and I'm sure that the hepatosteatosis isn't helping me, but at my current weight I shouldn't have those problems.

Their conclusions were:
-stop eating fried foods, stop drinking alcohol,
-take some vitamins

What they didn't understand is :
-I haven't been eating fried foods and drinking any alcohool for the past years since I've had past liver problems (they were totally ignored)
-Taking vitamins and resting will just make me less able to work, possibly make me lose any phisical condition that I might have.
-I NEED to run or do some sort of intense workout because it helps me focus and maintain my weight.

A few works about my past:

In 2005 I had my first liver problems, the liver enzymes were high (at about 200). I fixed that by sleeping a lot and not doing anything.

In 2007 my liver enzymes were at about 400 (the 'normal' values being < 50). I had laparoscopic surgery to fix a hiatal hernia that caused massive acid reflux.

The liver biopsy then revealed hepatosteatosis. Again, fixed that by sleeping a lot and watching my diet - my weight has fluctuated a lot, and right now, at my present weight i shouldn't even have a fatty liver.

In 2009, one year ago, I had pneumonia. The doctors called it idiopathic pneumonia, afaik that's a nice way of saying that they don't know what caused it. Recovering from that (to be honest it was pretty bad for me) I ate a lot and got fat. That's when I started running. I lost *a lot* of weight running and for the first time in years I started having energy and feeling healthy. That's why I would like to be able to keep doing it.

I didn't have any sort of viral hepatitis, AIDS, they blamed the liver problems on eppstein-barr and/or the fatty liver.

My apologies for this long post, there might be more coming...

I would honestly appreciate any answer/advice/discussion on this since it basically turned my life upside down: I started working from home (and not being very productive with that), I never got to finish the university (computer science) , I keep getting fat/thin, and my mental state isn't all that good, I'm sure you can imagine that.

Thank you

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