2 years and not diagnosed yet.....

[Ktaunt]

When my youngest child was 6 months old I had a horrible case of gastroenteritis. Since then, I have never fully recovered and have been doing every type of test imaginable, she is now almost 3 years old.

Originally, it started out as constant nausea. No matter what I did and what anti-nausea med they gave me, it never went away. My GP gave me all the least expensive GI tests he could, and every blood test that may explain my issue. All showing normal. I had one point below abnormal for my white blood cell count, and one point below normal for my cortisol level. Multiple tests for lupus and other auto immune disease all come back normal.

Symptoms over the last 2 years have changed. I still have nausea. I also now have pain and its location changes. I have near constant headaches. I am EXTREMELY tired all the time. I get the shakes, and have a hard time regulating my body temperature. I have developed intermittent mouth sores. I had an endoscopy which showed negative H pylori but inflammation. My colonoscopy was normal. My gall bladder is functioning at 85%. My IBD panel showed the IGA serum number almost 40 points higher than normal. It basically feels like I am coming down with a stomach bug all the time. They have run every GI test possible, today was my last test before they refer me to a neurologist. I had a small bowel MRI this morning.

I have been reading posts in this forum and realize there are a lot of people like me! Thank goodness. I really have been beginning to doubt my sanity, although the doctors all say they know something is wrong because I have never been one to go in to the doc for almost anything. The docs have been working hard and I am blessed to have a great hospital and staff that has been understanding and helpful. Anyone else been working on a diagnosis for over 2 years?

 

[Eridon2002]

Did they take any biopsies when they performed your colonoscopy? Sometimes things look normal but the biopsies show a lot more. Have you had a fecal calprotectin test? This measures intestinal inflammation.

 

[Ktaunt]

Biopsies were normal on the colonoscopy. Inflammation on the endoscopy biopsy. I have had some kind of fecal test done, but I don't recall the name.

 

[Clash]

Have they considered differential dxes like bechets? There was once a memberwho was frquent on here who like you went through numerous tests yet no definitive dx. I think it went on for a few years but she was dxed as having bechets.

I'm going to tag Jennifer and cat-a-tonic as they may remember her and her experience ie tests, labs etc.

I hope the small bowel MRI brings you some answers!

 

[Cat-a-Tonic]

Thanks Clash. I do indeed remember the person you're referring to and she was indeed diagnosed with Behcet's. Her thread is here:
http://www.crohnsforum.com/showthread.php?t=44354

 

[Ktaunt]

OMG, thank you for sharing. If this test comes back normal, I will definitely mention it. I don't have the chronic D as she speaks of, but everything else matches. I also don't have chest pain, but maybe I'm not far enough in to experience it. Crazy. Thank you.

 

[fuzzy butterfly]

Hi ktaunt.welcome sorry you need to be here tho. Hope you find the answer soon.:hug:

 

[Cat-a-Tonic]

Ktaunt, from what I remember of her story, the girl whose link I posted - the chest pain didn't start for her until she was something like 7 years into her illness. So yes, for her it did take quite awhile for her illness to progress to that point (and she was untreated that whole time because she was undiagnosed for so long). If your symptoms are similar, I definitely encourage you to look into Behcet's. Unfortunately it's a pretty rare illness and many doctors haven't even heard of it, so you might have to seek out a doctor who knows about Behcet's. You may want to also look into Lupus because that can have similar symptoms as well. Good luck!

 

[ronroush7]

I am not sure about all the rest. You mentioned you were having tttoublr regulating your body temperature. Have you had your thyroid checked out?::I tend to be colder than my wife. Once , during a check up, my gp discovered my thyroid was off. I hope you get answerds soon.

 

[Ktaunt]

My MRI came back normal. I am being referred to U of M for speciality consults with rhuemtolgy (sp?) neurology, and GI. I have lost count of how many times I have been checked for lupus and thyroid. My doctors don't want to waste anymore time. So blessed to have a great hospital, and doctors. Hope I have answers soon

 

[ronroush7]

My MRI came back normal. I am being referred to U of M for speciality consults with rhuemtolgy (sp?) neurology, and GI. I have lost count of how many times I have been checked for lupus and thyroid. My doctors don't want to waste anymore time. So blessed to have a great hospital, and doctors. Hope I have answers soon

Hope so

 

[JaimeM]

Good luck! I'll cross my fingers for u

 

[fuzzy butterfly]

Hope you get an answer real soon. Best wishes

 

[Ktaunt]

Met with the U of M docs. They are treating me for fibromyalgia. If the very comprehensive treatment doesn't work after a year, it will be back to the drawing board. Right now, at least they have a direction and name.

 

[fuzzy butterfly]

Hi ktaunt, I am pleased they are treating you and hope that it really helps you feel better. Best wishes
Let us know how you get on..

 

[Dmarks70]

I'm in a similar situation. Had symptoms for almost 2 years. Had many negative tests but pill cam showed ulcers and inflammation. Fecal Calprotectin test also quite high. They do seem reluctant to diagnose anything but unsure why. You're not alone!

 

[ronroush7]

I'm in a similar situation. Had symptoms for almost 2 years. Had many negative tests but pill cam showed ulcers and inflammation. Fecal Calprotectin test also quite high. They do seem reluctant to diagnose anything but unsure why. You're not alone!

I am sorry