Need some input for an undiagnosable problem

Blood has to come from somewhere. I'm suspicious about an upper GI endoscopy that didn't show a source, unless it was done long enough after an event for the source to have healed. Vascular problems (like arteriovenous malformations) can easily be missed on endoscopy or upper GI series, but they are uncommon in the stomach or duodenum. I hope she finds a smarter doctor. Is she bleeding enough to be anemic? That could be part of the falling asleep thing, though it sounds pretty dramatic.

I'm sure they tested her for anemia, right?  My sister went through a period (but she already had the pouch) where they tested and tested for 2 years and they never could find out where the bleeding was happening.  Finally, went to C.Clinic.  She had a mass of just adhesions and junk under the pouch which did not show up on any MRIs, CAT scans, etc.. and no one found it during scopes - it was separate and behind her pouch - kind of like in a little sack of its own - totally benign.  Took it out.  She still has to have some blood, but only rarely and has done really well ever since.  I don't know where your niece lives, but I'd say get to a really good place/doctor.  Also, all the physical issues could be causing the sudden falling asleep due to mental exhaustion/stress of being afraid.  Flight or fight goes into action.  I would hope she would get help not only for the physical issues, but the emotional issues that are probably all connected.  I am so sorry and I hope she finds some good help.  I hope she has good support system.  Is she a mom and taking care of her kids too?  She needs help - as in  - physical help - as in hire some help if no one in the family can be there.  Bless her, I hope she gets answers soon.  I think sometimes women at that age are in complete overwhelm and it manifests in all kinds of physical issues.  I'll be thinking of her and keep us posted on how she is doing. 

My info is somewhat vague on when they did the endoscopy (how long after the incidents) but I think that she needs someone to start again from the begining.

This has to come from somewhere...upper G.I. bleeding cannot be without an origin...could it be from the esophagus?  That wouldn't bring up bile...2 seperate sources for the bile and blood...Doubtful.

I agree that she must be anemic...all of that bleeding must be doing something to her system...thus the sleeping (unless she really is narcoleptic and they haven't tested her for that). I do understand the exhaustion...a lot of us have it. 

She will be living 2 weeks on/off here in Paris again and I want to drag her to my surgeon for a consult...he knows a lot of people who may or may not be able to help...I think that she needs a really good diagnosticien...(Dr House?)

She is single (poor kid does not belive that she can be a good mom in her present state and thus cannot maintain a relationship over time...The guys run away when they see a sick girl with no diagnosis).

Family at witts end...I love this kid like she was my own...and am desperate to help.

Sharon

Bleeding from the esophagus is certainly a possibility, but without more history it's hard to tell how likely/unlikely. The bile might just be related to the vomiting and indigestion, rather than having the same cause as the bleeding. In the US esophageal bleeding usually comes from swollen veins (esophageal varices) caused by alcoholic liver cirrhosis. In some other parts of the world it's often caused by worms (schistosomiasis). How is her liver? Heck, was this preceded by travel to the developing world?

Drag her to your surgeon if you can. Feel so bad for her.

Scott,

She travels all over the Middle East and Eastern Europe, She is a tour guide and travels a lot with her groupes.

That is why they started checking for unusual forms of Mediterranean viruses and bacterium...

Never thought about worms...highly possible...with all of the restaurant food that she must eat in very strange places.

No alcohol, ever...she doesn't like it.

The whole family has a varicos vein problem...they are all thick as ropes in their legs, hemoroids etc so that is not so far fetched...

She should be in Paris in the next week or two and I will drag her to have it all re-done...

Thanks Scott

Sharon

Schistosomiasis isn't caught from contaminated food, but rather from immersing part of the body (e.g. Feet) in contaminated water. You don't want to know how the things get into the body. So if she went swimming in the wrong pond...

This is not a likely cause, but it's on the list.

Yuck...trying not to imagine it!

What are the symptoms?

Grasping at straws here.

S

The symptoms are many and varied, depending on where the schistosomes go. The only symptom that made me even think of it was the (possibly esophageal) bleeding (and the diagnostic difficulty).