Newbie with Questions

Hi, my name is Angela, just trying to hear some opinions on my situation, last October I developed a red, hot swollen node on my shin-noticed my wrist had been hurting asked a doc I work with what he thought the red node was- he told me erythema nodosum and that I should see my doc, went to my doc had tons of labs done, throat swab, chest x-ray and was referred to a rheumy, labs were coming back nl except for slightly elevated protein level, x-ray neg, throat culture neg, saw rheumy he thought maybe lupus- did more labs all WNL- prometheus test comes back pattern consistent w/ crohns-w fibrostenosing in the small intestine- now I have always had issues w/ stomach aches, IBS- constipation issues and sharp shooting pains like I was being stabbed in the rectum at the time I was referred to GI- he didn't feel the test was of that much importance but figured that CT scan and colonoscopy would rule out crohns- has scope and scan done as well as biopsies- all came back neg except they mentioned that I had IBS- went back to GI he felt confident that we ruled out crohns- gave me levsin for bowel spasms and scheduled re-ck in 6mo, told me I prob has some fibromyalgia and some connective tissue prob and to follow up w rheumy- never was told I needed to see rheumy again as he thought it was a GI issue- well I have been having stomach aches that have gotten worse, night sweats, about 8# wt loss, random joint pain in my knees, ankle and back pain (spinal area) nausea, went to see primary MD- she wonders why sm bowel wasn't assessed, ordered more labs and started me on librax, that gave me diarrhea (I guess it usually causes constipation) My doctor is waiting for my newest labs to come back before sending me to a specialist again- I guess I was just looking for someone to comment on the small intestinal issues w crohns, has anyone else had a false positive prometheus?

 thanks,

Angela

I'm not that familiar with the Prometheus tests, but the overall impression I have from reading many many posts here is that there is no clear, deifnitive diagnostic test or series of tests that will always and conclusively rule Crohns in or out. Iwould say the small bowel tests would be important, as it is fairly common to find no clear Crohns  via colonoscopy and then isolate it in the ileum by SBFT and/or pill camera.

The joint pain and stomach issues have me concerned. I had been dx'd in 1999 about 4 years ago I started getting joint pain more stomach issues and headaches and tiredness well of course its the Crohns all these things are the Crohns. Well can you guess after the extreme fatigue one of the Dr's suggested running a lyme test " just for the fun of it" well of course positive. So lots of time for it to fester, and then try to treat on top of the Crohns is a joke anyway see if they will test for Lyme a lot of your symptoms are of Lyme. You just never know and we need definative answers for optimal care. Hope things get better soon and you get some answers Sorry you had to find us but glad you did. : )

Hi and Welcome to the HealingWell forum. This is an oustanding site and there are good ppl here.