Discussions By Condition: I cannot get a diagnosis.

Why can't anyone figure this out?

Posted In: I cannot get a diagnosis. 2 Replies
  • Posted By: latejuly
  • March 28, 2009
  • 03:34 PM

I have had chronic B12 deficiency since I was 12, and anemia since I was 4. It comes and goes my levels tend to bounce.

In the past 6 years I have been very ill.

I lost 35lbs, and I hover around 100lbs now.

Nausea is horrible, diarrhea often accompanies it.

I get these attacks where I get dizzy, start dry heaving and have to use the bathroom. I start shaking, sweating, and I have a hard time walking. I can't stand up straight. The pain is around my belly button (it swells) as well as all the way through to my back.

I have muscle aches, to the point I can't walk. The rheum. doctor says I have inflammation but my blood work is negative. When I wake up in the morning I can barely move.

The doctor also said that I have extreme weakness on my right (dominant) side.

I faint easily even when my b12 levels are normal, I've gone years with normal b12 levels.

All they know is I have HLAb27 gene, and problems with my RBC and B12. that's it. I take supplements and have a very good diet. I've gone to three gastros who have done colonoscopys and endoscopys with no results.

I don't know what to do. i can't function anymore and no one seems to know what the problem is :(

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2 Replies:

  • Have you had B12 injections in addition to taking a supplement? I had a course of injections last year when my B12 was found to be low. The injections boost your levels much faster than just taking a supplement and start acting immediately. My B12 was over 1000 after having injections for a few months. I'm no expert, but I did a lot of reading about B12 when I found out my levels were low. For people with ongoing problems with B12 regular injections are recommended. I hope you find an answer to your problems. :) Beth
    Miricli 3 Replies Flag this Response
  • I have had chronic B12 deficiency since I was 12, and anemia since I was 4. It comes and goes my levels tend to bounce.In the past 6 years I have been very ill.I lost 35lbs, and I hover around 100lbs now. Nausea is horrible, diarrhea often accompanies it. I get these attacks where I get dizzy, start dry heaving and have to use the bathroom. I start shaking, sweating, and I have a hard time walking. I can't stand up straight. The pain is around my belly button (it swells) as well as all the way through to my back.I have muscle aches, to the point I can't walk. The rheum. doctor says I have inflammation but my blood work is negative. When I wake up in the morning I can barely move.The doctor also said that I have extreme weakness on my right (dominant) side.I faint easily even when my b12 levels are normal, I've gone years with normal b12 levels.All they know is I have HLAb27 gene, and problems with my RBC and B12. that's it. I take supplements and have a very good diet. I've gone to three gastros who have done colonoscopys and endoscopys with no results. I don't know what to do. i can't function anymore and no one seems to know what the problem is :(Have you had the celiac panel blood test or better yet been biopsied for celiac's??? It causes all sorts of funky things...swelling around the belly, stunted growth or weight loss, vitamin deficiency. Childrenabdominal bloating and painchronic diarrheavomitingconstipationpale, foul-smelling, or fatty stoolweight lossAdults are less likely to have digestive symptoms and may instead have one or more of the following: unexplained iron-deficiency anemiafatiguebone or joint painarthritisbone loss or osteoporosisdepression or anxietytingling numbness in the hands and feetseizuresmissed menstrual periodsinfertility or recurrent miscarriagecanker sores inside the mouthan itchy skin rash called dermatitis herpetiformisIt is possible to have a gluten intolerance without testing positive for celiac's (this is the boat I am in). My life has been much better since I kicked the gluten habit...except for the occasional big mac that I cherish.BlessingsConnie
    sleepingbeauty 22 Replies Flag this Response
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