Mystery Ailment... Can anyone help?! Pleaaaaseee.

[Lexxtech18]

So once again I'm a mystery case. For the last, oh say, year and a half or so I've been having these "attacks". They come around every couple of months and just totally incapacitate me. I get a terrible pain in my right upper abdomen, right below my ribcage and it shoots straight through to my right/middle back and radiates up to my right shoulderblade. It's excrutiating. I can hardly breathe, and deep breaths make it worse. Headaches, nausea and diarrhea usually accompany. I've been to the ER countless times. Once my Lipase was slightly elevated, so I was suspected to have acute pancreatitis. Spent three days in the hospital. Then every other time I went into the ER or saw my PCP about it, they told me I had pleurisy. Even though there was no proof of it. No elevated ESR, nothing on an x-ray, zip, nada. They give me pain meds and send me on my way. *sigh* Then over the weekend, I had a bad attack, I mean CRYING and I'm not a crier. Some co-workers were telling me it sounded too much like a gallbladder attack to be real, so I went to the ER, told the doc my symptoms and the first thing he wanted to do was check my liver enzymes and get an ultrasound of my gallbladder. 5 hours later and wouldn't you know? NOTHING AGAIN. My gallbladder looks beautiful, no stones, no sludge, no inflammation. Labs are perfect besides and very slightly elevated SGOT at 44. So they gave me pain meds and sent me on my way. ARGGGG!!! I'm at my wits end here, people. I'm not looking for a diagnosis here, I'm simply asking for some suggesstions. I can't keep going like this afraid to have another attack every couple of months or sooner. Is it possible it's dialysis related? Could I have a kidney infection and not know it? I dont know. I'm runing out of ideas. And my PCP is NO help at all, which is why I am shopping around and have an appointment with a new one next month. I need answers because this is getting ridiculous!! 

[boswife]

no help here, BUT, oddly, Bo is having a pain in his right side, just under (ok HIS words) his tit, and going around to his back.  Dr's did liver tests etc, and didnt do mri as they said to hi for gallblader and 2 drs have sent him on his way with pain meds.  He's so misserable!  Not quite the same as yours, as his kinda goes on and off during the day, then hitten harder at night..  He's starting to feel better on different stuff, and then this!!!  You guys cant catch a break sometimes.  Keep in touch as you, and Riki, and kitkatz are all having right side crap.  Kit's has been found and fixed  , and gonna go see how Riki's is.  I wonder what yours and Bo's is   Somethings got to be found!!  Sorry!   

[Lexxtech18]

LOL I'm sorry I had to laugh at the "tit" comment. xD it is just so frustrating to think you have things all figured out and then NOPE! Geez. Well I hope Bo gets things figured out and feels better soon. And let me know when you do, maybe it will be the same for me!! lol I'm so glad KitKatz is doing better. I was worried when I saw the post from her daughter. I think I'll check in with Riki, too. We can all have one big hospital party. haha Thanks, boswife. *hug*

[Deanne]

That sounds miserable! Did the check for a cyst on your ovary?

[Lexxtech18]

Actually no, they haven't. That's a really good suggestion though! I had my yearly exam/PAP done a couple months ago and there was nothing out of the ordinary... I'll have to check in with my PCP about it. Thanks, Deanne!

[Jean]

Maybe Diverticularitis? Look it up in Google. They found mine thru a CT scan.

[amanda100wilson]

Hi, sorry, no suggestions, but Boswife, I really think that you should mention this to Bo's doctor.

[BattleScars]

Sounds almost like an issue with your gallbladder. Have they done an ultrasound to see if there's something there causing this?

[WifeofDiaylsisPatient]

Sounds like gallbladder to me.  When I had my first attack, I thought I was going to die!!  Pain right in the middle of the chest, above the stomach.  Didn't know if I wanted to throw up or have diarrhea.  They could not find any stones when they did the CT scan.  They finally felt that my symptoms were strong enough to point to it being my gallbladder.  When they took it out and opened it I had all sorts of very tiny stones and sludge not picked up by the CT scan.  Do you notice that if you eat fatty foods/rich foods that you have an attack?  Try to remember what you ate that day or the day before you had the attacks.  Foods high in fat will trigger an attack.  Hope you get some help soon on this!!!

[BattleScars]

Yes, that's a huge symptom. Also, I was listening to a radio show recently when a guy called in complaining about his gallbladder and the doctor asked him if he recently been fasting as fasting can also cause an attack or symptoms.

[obsidianom]

You need a CT scan with contrast (if your nephrologist allows the contrast) , if not , then  CT with just oral marker that is safe. Without CT you have no assurance of anything. If that fails to show anything, then MRI and possibly MRCP for ducts.

[Riki]

Boswife, I'm surprised they said that Bo's pain is too high to be gallbladder.  My pain was directly below the breast bone (so, yeah, under the tit.*L*) and it would radiate through to my back.  When they did the ultrasound, they found that the stones were not only blacking the gallbladder, but the pancreas as well.  They did the MRI and saw that there were no stones in the ducts, so after a bit of arguing, I had the gallbladder removed on Tuesday.  They couldn't do it laproscopically because of all the scar tissue from other surgeries, but they say everything is healing nice.  I refuse to look at the incision until the staples are removed.  For Lexx and Bo, I think you guys should have your liver and pancreas enzymes checked, just in case the stones are affecting something else besides the gallbladder

[Lexxtech18]

Thanks for the great suggestions, all. I'm really thinking it's my gallbladder also, just that the ultrasound didnt pick up stones or sludge, as in WifeofDialysisPatient's case. I'm hoping to get an appointment with my (terrible) PCP next week to try to get a CT scan or possibly an MRI. I just want to get to the bottom of this thing once and for all.

[ChrisEtc]

I just had pleurisy and your symptoms definitely don't sound like pleurisy.

[natnnnat]

No ideas or suggestions, just some sympathy, sounds wretched.  Hope it goes away with no further medications or interventions required.  How nice that would be.

[boswife]

I agree Riki!! everything i hear here points in that direction. Im hoping it all mellows out as even a year ago, they didnt want to do anything about it because of his 'condition'

and Lex,,, i sure hope you find and fix..

[Riki]

I agree Riki!! everything i hear here points in that direction. Im hoping it all mellows out as even a year ago, they didnt want to do anything about it because of his 'condition'

and Lex,,, i sure hope you find and fix..

you have to fight to get them to do anything.  I had to fight them to get this surgery done, but I wasn't leaving until it was done.  I had no want to go through that pain again, or to risk damage to the pancreas either.  One of the surgeons seemed very apprehensive about doing the surgery, and was actually trying to dissuade me from having it done.  I don't think he wanted to do it because of dialysis and other surgeries that I've had

[Lexxtech18]

So I have an appointment tomorrow to have a gallbladder scan done and also a pelvic ultrasound because my PCP thinks I may have polycystic ovarian syndrome. Finally feels like I'm getting somewhere with all this.

[obsidianom]

Let us know the results.  Good luck.

[Riki]

sometimes it's good to finally get a diagnosis, and know you're not crazy.... that's how I felt about my gallbladder.. I was glad that there was something real wrong with me

[Lexxtech18]

Agreed, Riki. I had the test done on Friday, now just (anxiously) waiting for the results. I have a doctor's appt on Wednesday to review them. Really hoping for some conclusive news, be it bad or good. I just want answers.

[Lexxtech18]

UPDATE! Went for my followup today... yup! it's my gallbladder. I have a Dyskinetic gallbladder, I guess that means it doesn't empty completely which causes it to contract and cause pain. I have an appt witht the surgeon, who will be removing it, next Friday. Just glad to finally have a diffinitive answer. *huge sigh of relief*