What in the WORLD have I got??

Dear smart people,   :)

My gastro specialist is stumped, my family practitioner is stumped, I am stumped.

Me:   35/m, 6'0" 220 lbs (10-15% overweight)

Symptoms:    High difficulty going to sleep at night due to itching all over.  Dizziness.  Upper-right abdominal pain.  This has gone on for 6 months.  It's actually easier to sleep during the day (and, hence, when I don't want to).   Moderate pain in a very specific location:  put your thumb on your xiphoid process, and move to the right one inch.  Right there.  The pain is more pronounced shortly after I eat something.  I'm still trying to figure out if some foods do it more than others, but I haven't quite put my thumb on it yet (pun intended).  I think overeating makes it worse, and possibly high-protein foods (this includes beans and nuts).  Fasting is effective at ameliorating all the symptoms (when I can actually do it...).  I looked on an anatomy chart, and it looks like this pain is located at the spot where the biliary duct joins the liver.

Claritin is mildly effective relieving the itching.  Zantac is very effective.

Liver function test (i.e. blood test) is normal.  I've had it done three times, and one time I had one enzyme slightly elevated.  Ultrasound turned up fatty liver; that's it.  HEDA liver scan was painful to do, and showed a gall bladder contraction ~7% below normal levels--which my gastro specialist said he would never recommend surgery over.  

Before I was referred to a G.I. doc, I tried taking Milk Thistle supplements.  This relieved the symptoms for about 3 weeks, and then they returned.  After I saw the G.I., he put me on Actigal/Ursodiol, and that relieved the symptoms for 9 weeks.  Now the symptoms are back, even with Ursodiol.  And this time I am having occasional dizzy spells.  I actually have less dizziness when I fast for >8 hours.

Speaking of which--I thought it was unrelated until now--but I visited the emergency room twice in the last 3 years for numbing on the left side of my face.  Both times the doctors ruled out stroke, didn't know what it was, and let me go.  I get numbing sensations there occasionally now, and I don't bother going to the hospital for that anymore (not unless I start getting slurred speech, etc.--that has never happened).


Okay, whoever figures this one out, I'm recommending you for an award.  Don't know what....  Maybe the American Medical Assocation heart-shaped Cookie award.

[lucy808]

Parasites - can cause itching/dizziness/abd pain...?

[tetleytea]

Now that's an interesting idea.   My family doctor put me on 30 days' antibiotics several months earlier to treat a testicular infection.

[lucy808]

I don't know alot about it but I do know that parasites can "rest" in the brain and liver.  They go through cycles and may shed in the stool.  Stool for ova and parasites test is good...but you need to submit quite a few samples separated by a few days in hopes of catching a shedding period.  Also your blood test may reveal an elevated eosinophilia.  Maybe empiric treatment is a possibility but with a "fatty liver"  your doctors may not want to thow medications at you.  Is your bilirubin normal?

[tetleytea]

I had 3 blood tests drawn, and 2 were completely normal; the 1 had some level that was 92 when 88 was the upper normal limit.  It could have been bilirubin, not sure.  Regardless, milk thistle corrected that level down to 85.   Doctors don't seem to be terribly concerned about fatty liver--20 million Americans have it, and it's usually asymptomatic.

Looks like there are various herbal treatments out there (cloves, black walnut, grapefruit seed extract) which claim to treat internal parasites, & which don't exhibit particularly harmful side effects even if you're wrong.  I'm giving grapefruit a try.

[scaredinboston]

psychosomatic?  the syndrome you describe does not fit any known liver or gi process

[grlygirl]

oh my gosh, we sound the same.  I have had a mild to severe pain in the middle of my ribs (stomach area) Sometimes It hurt so bad I started crying when the doctor touched me there. I have had numbness on my left side also.  I to went to the emergency room, and they ruled stroke and heart attack out.  I have had both test for my gallblader (gallbladder), ultra sound and then when they put the die in you and put you through a xray machine,  an endescopy(I think thats how you spell it)  where they put the scope down your throat.  A swallow test, an ultra sound on the liver, pancrease and heart, all were normal.  Now my hands are turning yellow? What is this about?  My symptoms come and go also, if I dont eat I feel much better.  Please let me know if you find out any information.  The doctor has but me on nexium and carafate which has helped. I hope someone has some help for both of us, I am going to see another doctor and just ask for my gallbladder to be removed, I don't know what else it could be.  I went to 4 doctors and at first all of them thought I was nuts and tried to put me on antidepresents and anxiety medicine.  

[tetleytea]

I wouldn't just ask to remove the gall bladder if I were you.  No doctor would ever do that.  They'd get sued so quickly....   You may try and ask to be put on Urso.  I did and the Dr. agreed to that.  I think the problem with all these tests is that they demand you fast before taking them.  Dude, ultrasound me when I'm HAVING THE SYMPTOMS.   I don't have symptoms when I fast!  Let me plunk down 8 slices of pizza and see if I'm steatohepatic then!    They make us all fast because that is the only way to compare apples to apples  (in other words, if we ate, results would vary depend on WHAT and HOW MUCH we ate).  Problem is, we don't exhibit the problem when we fast...  You get a false negative, over and over again.

I may just have to bite the bullet and lose the 15% body weight.  This thing may actually be a blessing, if that does the trick.    DO keep in touch, please!

[fariasgirl]

Ive managed to have pain for the past 5-6 months now and didnt lose weight till three weeks ago, but ive lost 13lbs so far... I feel so sick now, and i havent eaten in 5 hrs... i have pain in left and right upper quadrants, i have nausea and i have a trashcan beside me... (just in case) =) i cant wait to get my gallbladder out... 11 days... i think that im going to stop eating, like i said in my last post... im just sick all the time, eating or not lol... i didnt need to loose weight, i was 5'3" and 133lbs... but the past three weeks ive just not been able to eat... i hope the doctors figure out whats wrong with you... and get it fixed lol... i hope the removal of the gallbladder is the right thing to do for me... doc says that since my hida scan didnt yeild the same exact results that an attack causes, its only an 80-85% chance that my symptoms will clear up when its removed... not as good as a 97% chance if its the exact same results lol... But good enough for me... ill try anything right now lol...

Also, grlygirl, unless you can have your doctor lie on record, your insurance wont pay for a gallbladder removal if its not medically necessary... but some doctors will do them even though its not needed as long as you pay for it and not go through your insurance company... Good luck!!!

[bobbisox]

A fatty liver just means you will develop cirrhosis in the next 20-30 years.  Good news, lose weight and the liver will return to normal.  Your symptoms are wide and various leading to a myriad of causes.  It sounds like biliary colic, gall stones or even a hiatel hernia.  Are the rest of your lab tests normal?  Has diabetes been ruled out?  If diabetic, your symptoms are classic for gastroparesis.  I hope you find an answer soon. Unfortunately, sometimes, there aren't any answers.

[tetleytea]

Diabetes was ruled out right away in the first blood test.  I thought the same thing about gall stones and/or biliary cholestasis, except that Ursodiol should be slowly improving my symptoms if that was the case.  Instead it was a sudden, immediate help, and then symptoms just slowly crept back.  Makes no sense.

[wldfowlr]

Read my post "going crazy" 11/30/07in this forum....also in the ask an expert forum.....his advice may be something for you to consider......I was just started on ursodiol yesterday as an "experiment".....I have had every test you can have.....still can't nail down a source....Did you lose the bloating and itching while on the ursodiol?......My doctor originally thought I had bile duct cancer or PSC....the ERCP and liver biopsy have showed negative, so he started me on the ursodiol as a test, for 14 days, to see if my itching stops and my CBC changes.....

[tetleytea]

Urso was effective relieving the itching.   In my case, the itching is my only real symptom affecting quality of life.  It kills my sleep.   Problem is, after about 3 months the itching came back.  My G.I. dr. said that was bizarre.   Lately I have been playing around with my diet--fasting is ALWAYS effective relieving the symptoms--as in I am less dizzy when I fast (normally you would think it would be the opposite).  But now I'm beginning to suspect fatty foods causes it.   I've probably been overeating on fatty foods for years now, and my liver is just getting tired of it.

I'm going to try going vegetarian+seafood and see what happens.  And go hard on the apple cider vinegar to try & clear everything out.  I think it's gonna work--if I actually have the discipline to DO it....

[tetleytea]

wldfowlr, I can't find your posts in either of those forums you mentioned.  I wish they had a forum search function.   Do you remember any other unique words I could search for on medhelp to try & find them?   I tried searching on "crazy", but got 5000 hits.  :)    Seems like a common thread around here.   ha ha ha ha ha ha

[wldfowlr]

yea....in the undiagnosed symptoms forum......under "going crazy........"

I still have the itching fasting or not......the bloating stays there as well, just not as bad......my itching is confined to the arms and shoulders....where is yours?

[walden]

I also have had extreme itchiness for months. Then, within the last month, the GI problems began, including bloating, nausea, gas and now dizziness. Actually, the symptoms for me began as such:

1) itchiness (for months)
2) gas
3) nausea
4) dizziness

I don't have any numbness. All of this sounds like a liver issue to me.  I think that we are all poisoned. Our food is tainted. I am going to fast and then do the apple cider vinegar to clean things out. I am going to move to vegetarian plus low-fat seafood (no shrimp).

I cannot believe this is happening to me. Never before had I any significant health problems (I'm 48). I run regularly and eat relatively well. I don't smoke or drink.

[tetleytea]

Don't worry, man.   One of the reasons my G.I. doctor is blowing me off is because he does NOT think it's a significant health problem.   If he thought it was, he said I would be at the Mayo Clinic right now.   My doc doesn't know what I (or "we") have, but he's got multiple pancreatic cancer patients he's dealing with.

[wldfowlr]

My itching is limited to my arms and shoulders ( where is your itching?)......I have been on the urso now for 4 days and have itched once for about 2 minutes...My GI thinks that I have some liver "disease", but can't pin it down.....He seems to think that if I take the urso and things dramatically change, then he will be able to tell me what is wrong.....Also, My diarreha has stopped....just have a little bloating.....this is pretty drastic, since NOTHING has helped like this before.

[walden]

What helped with the bloating and itching? I don't think it matters where one is itchy. For me it the tops of my feet, head, legs, just about anywhere. I also have the bloating and gas. Does this sound like a parasite? I see a doctor today.

[wldfowlr]

I was placed on urso forte 500 mg.....It seemed to relieve the itching and bloating for a few days....then last night and this morning, it was back.....I asked where the itch was becuase one of the symptoms of Primary biliary cirr. is itching on the hands and arms.....