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From:
Judy Lockyer <[log in to unmask]>
Reply To:
Judy Lockyer <[log in to unmask]>
Date:
Tue, 2 Oct 2007 13:21:57 -0400
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<<Disclaimer: Verify this information before applying it to your situation.>>

This is the summary of symptoms my friend did for me.
I'm going to post a summary of some of the nice replies that were sent to me
for my friend San at the end of her symptom list. Please note that she has
been gluten free for a while now. I know I should have added that in my
first post. I'll put san's email address in this as she gave me permission. 
[log in to unmask]
Please send your replies to her address so it will be faster for her. Thanks
for helping my friend. She has tried repeatedly to do her own listServ post
and has been unsuccessful.Judy in Philly
______
San's note 

I saw Dr.on Wednesday.  I was able to go through all my journals and track
my pain and symptoms.  I had that all to give him, along with results from
Dr. from Grand Rapids and office notes from my GI doc here.  We went through
all the tests I have had, results, and how nothing is showing up, yet I am
feeling pain for over 2 months 24/7.I told him how
sick I was of going every week with 1 test to try to figure this out only to
find out , nothing,  while  barely functioning.  I have a family here to
take care of, a mother with alzheimers to take care of and I have to work. I
can't do this any longer according to "their time". But in the end, he just
ordered another test!  Ok... 

So, he ordered an IVP, as I asked him about the hematuria I have had,without
any reason for the past year.  OH..yeah he says, maybe we should check out
your kidney's he said, being you have right/flank pain. This is after having
Ultrasounds/Gastroscopy/xrays/labs/HIDA scan/CAT scan/ERCP.
Then, he says:  I WILL GET BACK WITH YOU NEXT WEEK ON THIS.  OMG I just want
to find a compassionate caring doctor who I don't have to tell  what to do,
why should I be doing all this work while I am sick trying to figure out
what is going on with me.  I want a doc who doesn't work according to his
schedule only, but also works w/a patient who is so much
freaking pain she can barely function!  By the way, that drug hubby and I
took to quit smoking was CHANTIX that
started all this with me and his tummy troubles. 
THE ONLY OTHER THING HERE IS, THAT HEMATURIA (MICROSCOPIC BLOOD IN
URINE)THAT MY PRIMARY DOC DID THE IVP FOR.
The ERCP showed nothing. He said it wasn't the same kind of test I was
Thinking that measured for the SOD or checked the pancreas. He was only
Going into the biliary system, looking, injected some dye and if there was a
Stone he would have removed it. He said that everything appeared to look
fine. He told me for the test I was thinking about, which I didn't want him
doing, would be something he would refer me out for. 
TESTS DONE... 
Ultrasound abdomen/kidney 
CAT scan 
HIDA Scan 
EGD w/biopsy 
Liver and amylase lab's 
ERCP
All of these tests are negative. He indicated that this could possible be
something to do with my fibromyalgia. All I could do is cry. I had hoped it
was a stone, and he would have removed it, and I would feel better now, end
of story! Fibro is hard enough to deal with, but add this abdominal PAIN
24/7...ugh. I feel crazy! 
My gut feeling is-- it's not to do with my Fibro. I have had
this now for over 9 years and never have I had the pain I am experiencing
right now. 
The only pain medicine I have is Ultram for my fibro and Tylenol 3 from my
primary doc for this stomach pain., occasional RARE vicodin,
I have no life since this all started 8 weeks ago. I do as little as I have
to, and working has been a nightmare. 
Because the ERCP and all these other tests are negative, do I just relent
and believe this is Fibro related, or is it that because the doc can't
figure it out, he is just telling me this? I can't stop crying...

SUMMANY OF SPHINCTER OF ODDI RESPONCES 

1. I did a bit of research, as I was unfamiliar with this disorder, and I
found the following.  Good luck - I hope that she gets better.

http://health.ivillage.com/digestion/0,,670q,00.html 

http://hopkins-gi.nts.jhu.edu/pages/latin/templates/index.cfm?pg=disease6
<http://hopkins-gi.nts.jhu.edu/pages/latin/templates/index.cfm?pg=disease6&o
rgan=3&disease=12&lang_id=1> &organ=3&disease=12&lang_id=1 

http://www.ddc.musc.edu/ddc_pub/patientInfo/surgeries/pancreatic/page16.htm

http://patients.uptodate.com/topic.asp?file=pancdis/8160

http://www.ikp.unibe.ch/lab2/SOD.htm

http://www.joplink.net/prev/200207/200207_01.pdf

2.From: Virgil [mailto:[log in to unmask]]
Judy,
I believe I may have the same condition.  If you are not going to summarize
for the list, could you forward me any solid information you receive?  I
would greatly appreciate it. Best regards,Ellen Fleming 

3.. Several people wrote about Sphincter of Oddi dysfunction which is a
problem with the biliary bile duct. When the sphincter malfunctions it
becomes overly tight and does not provide adequate draining of the
pancreatic and bile ducts. The result is a pressure build-up in the
ducts,leading to recurrent episodes of pancreatitis or biliary pain
mimicking gallstone disease.I was surprised at how many people have this
exact same pain as I do.
Only 3 wrote about this condition the rest are anxiously awaiting my
summary.

4 Judy - 
 Just go to the Google search page (www.google.com), and type "sphincter of
oddi" in double quote marks and hit the Google search button. 
You will get plenty links to click on in the returns, with plenty of
information. 
-Vicki

5. Does your friend have CD? 

Management of celiac disease
http://www.uihealthcare.com/news/currents/vol4issue2/celiacdiseae.html

"Some patients with CD may appear to have refractory sprue, but their
malabsorption is actually due to another more benign cause. Patients may
have unrecognized lactose intolerance, hyperthyroidism, or a motility
disorder. Patients may have scarring at the Oddi sphincter and develop
pancreatic insufficiency. However, most often patients have an occult
exposure to wheat, rye, or barley." 

Anne

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