Undiagnosed condition

Hi

I am hoping that someone here can gives us an idea of how to proceed.   My daughter, 30 yrs old, has been suffering with a gastro disorder since August. I should say, first of all, that we live in a remote community with access only to rotating doctors and a local hospital that can only perform ultrasound and xrays for a diagnosing.  For a few years she has had ongoing nausea and severe constipation, often with rectal bleeding.  Other background information that may or may not be important; she was born with minor right hemipalegia, at 7, she was diagnosed with epilepsy.  At 12, she was diagnosed with Fibromyalgia and at 14 she began with SVT, which was corrected by Cardiac Ablation at 22.  
In early August, she began to feel that if she ate even small amounts she was immediately full and then abdominal pain would start.   By the end of August, the pain of had become extreme and the first doctor thought she might have a bowel obstruction ( no testing done except a physical exam ).  She was put on a liquid diet for 5 days and told to come back if it did not help.   After 4 days the pain was worsening and she returned,  this time to the emergency room.  She saw another doctor who thought perhaps that it was her gallbladder.  He sent her home and told her to see him at the clinic when it reopened after the weekend.   12 hours later, she returned to emergency when she nearly passed out from the pain.   Again she was sent home, but when she returned to emergency with debilitating pain only 6 hours later she was finally kept her in the hospital overnight for observation and had an xray the following day.   They decided her gallbaldder need to come out immediately and she was flown to a small hospital 3 hours away for the laproscopic surgery.

2 days later the pain had not lessened and she was still unable to eat but the surgeon released her assuming that the pain was only from not yet passing gas.   During the 3 hour drive home she was in excruciating pain and when the pain had not lessened in 3 days we returned to the local clinic.   She was immediately sent to the local emergency room where they thought again she might have a bowel obstruction and kept her for 2 days under observation.   When they still could not determine the source of her pain she was referred back to the surgeon for an abdominal CT scan.   The scan was read by a doctor in a distant hospital and they admitted her to hospital for observation and testing.   They did a Colonoscopy and Endoscopy as well as blood and stool tests and after 7 days of hospitalization they released her as all her tests were negative.    
At this point she was still able to tolerate small portions of solid food several times a day.
She has been seen several times since in our clinic and in emergency.   She has been unable to keep solid food down since mid October.  Within minutes of eating she starts regurgitating and this continues for several hours until she vomits.    The pain has continued; somedays it is better than others but it is never completely gone,  About 6 weeks ago she started with a symptom I have trouble describing.   She has a spasm of some sort in her abdomen.   To me it sounds like a cross between a hiccup and burp.   Others say it sounds like a strange gasp.   SHe has several of these episodes an hour.
She has had a bone scan at a hospital 6 hours away ( not sure why a bone scan ) Like every thing else it was negative.   She was given a barium swallow test and although she figures she vomitted almost all the liquid she was told the results are negative.   She had a pelvic ultrasound and the technologist thought that her uterus was tilted.  The doctor diagnosed her with cysts and told her that it was unrelated to her other problems.  She has had liver and pancreatic enzyme tests which were negative
A few weeks ago we travelled 19 hours to a gastroenterologist who specializes in motility disorders.   He did nothing more than an cursory abdominal exam and told her the thinks it is part of her fibromyalgia and sent her home with a anti depressant.
Now 2 weeks later her pain is back to where it was 6  months ago.  She has nearly passed out from her symptoms.   She has not kept down solids for more than 4 months and now even thick liquids are regurgitated.   She still gets hungry but can not eat.  She has gone from more than 180 lbs to about 135 and is now losing about 10 lbs a month.  Each time she is seen by the doctors here she is sent home and told that they have done everything for her that they can.  As a result, she has had to go on longer term leave from her job as an elementary school teacher and is not able to collect any compensation due to the fact that the few tests done have come back negative.
She takes codeine for the pain, Despiramine for fibromyalgia,dosicate sodium and milk of magnesia for constipation, domperidone for nausea.  
We do not know where to turn.  We need a diagnosis and have very little help locally and have to travel a long distance to see any specialist.   What I would really like is to find a good specialist who would not expect us to travel back and forth 19 hours to do one test at a time.  We would like her to have a good work up where the doctor keeps strying to find the problem and not saying that they are baffled.

Can anyone help?

[Myown]

Oh my God, this is so awful. So sad to read this. I wish I had an answer, but I have no idea. I feel so bad for your daughter. And I cannot begin to imagine how hard this is on you to see your daughter go thru this.

I didn't check, but look at the forum list and maybe see if there is an "Expert Gastro" forum so that you could post to a doctor.

I really hope you find answers soon. I wish I had an answer for you. I don't but I will pray that God leads you to a doctor that has wisdom to help her so that she can get well.

Hope to hear your daughter gets well soon.

[mifegr]

I'm sorry that your daughter is suffering so much.  I am a nutritionist.  If it were me I would take all of her tests results and take her to Mayo Clinic.  They are a research hospital.  They will admit her and you will stay in a hotel near the hospital for patients families.  If nothing comes from this, take her to a holistic doctor.  There is a famous one in Florida who is also a devout christian and a very kind man.  His name is Dr. Don Colbert.  Go to his web site and check him out.  You may even want to go see him first before going to Mayo.  Good luck and may God be with you both.