Liver and kidney lesions and continuous right upper quad pain

[panhandle]

I have been experiencing upper right quad pain for 3 months.  Severe headaches for 6 mos.  Drenching night sweats for 1.5 months.  Lost about 10 lbs till I started pain med and got my appetite back.  Had ultrasound and cat of abdomen.  Found three lesions in the liver and one on the right pole of rt. kidney.  Two of lesions in liver dx 90% sure as hemangioma.  They are both 2cm x 3cm.  Other lesion no dx.  No dx on kidney lesion. Sent me to gas-ent who took a lymph node to rule out lymphoma that runs in immediate family.  No lymphoma.  Gas-ent sent me back to primary doc who wants to mri in three mos. Primary doc has no clue as to what is going on and is very aloof about it.
Even asked my wife if I was imagining the whole thing as liver lesions do not cause pain.  I've never been sick a day in my life prior to this mess and can assure you the pain and discomfort is very real. In the mean time we are told to sit and wait.  I just don't want to lose three mos to more pain and to time we could have spent taking care of my problem.  Is there any chance they are missing something that could be much more serious than a hemangioma?  Just wondering where to turn next.
There is a U. of Kansas school of medicine here. Didn't know if that might be someone to contact.
Thanks for your help.  panhandle

[Kalio1]

Have they ever tested you for Hepatitis C? It can be hard to diagnose in some people and very sneaky.

Ask them if they have tested you for it and make sure they rule that out.

[espana76]

Hi, Lindsey. I'm sorry to hear that you are going through so much but there seems to be many of us in the "same boat" so to speak.

Like you, I was experiencing URQ pain with vomiting, nausea, ab pain...the whole nine yards! My GI Doc found that my Gallbladder had an EF of 4.5% so they removed it in 2004. Here it is 2/2007 and I am experiencing nausea, abdominal pain, weight loss of more than 17 lbs. ( even after surgical menopause!), loss of appetite and depression due to illness. I am no better off than before my surgery. I have even gone so far as to eliminate all processed foods from my diet as well as dairy, sugar, smoked meats, pork, beef and most fish as it contains high concentrations of Mercury. I eat an all organic diet but still experience intense nausea and pain 24/7.

I have had an endoscopy, colonoscopy, CT scan with contrast (which shows lesions and hemangiomas on the Liver and right Kidney), MRI, tons of blood work but with no definitive diagnosis.

I am currently going to the Cleveland Clinic but still with no diagnosis. I have been told by GI and Rheumatology specialists that this could be Whipples Disease, Fibromyalgia, Sprue and many other diseases concerning the digestive tract.
Bloodwork does not support Celiac Disease.

What I have come to understand is that Doctors ARE fallible as are the tests that they order. I was told as much by my GI Doc. I asked her if she would be willing to bet her life on my test results and she said, "of course not". Tests are not 100% accurate nor are labs or the people who administer them is basically what she told me. Based on this information it is imperative that we educate ourselves as to the normal functions of our body. I highly recommend researching all information pertinent to your specific complaints as I have been doing for several months now and feel that I have some control over the direction of my medical care.

Allowing someone to take total responsibility for my health was dangerous and irresponsible. I did this for nearly 20 years and have recently decided that it is in my best interest to know how my body works.

Trust what your body is telling you and keep searching for answers...it's out there....somewhere.

Good luck and I hope that we all get the answers we need asap!

[lindsey28]

i myself have been having upper right and middle quad abdomen pain for one year and 8 months.  pains started and i would go to the er and everything was fine on blood work.  thought it was my gallbladder, numberous gallbladder ultrasounds was fine.  stayed in icu for 3 days while the docs did egd, gallbladder ultrasounds, blood workups, all kinds of tests, which came back fine.  doc that did my gastric bypass 3 years ago finely did a hydescan and called me a couple of days after that and scheduled surgery to take out my gallbladder because it wasnt working, that was december 23, 2005.  since then i still have the pains, they are getting worse and more frequent.  once again doctors say they dont know, blood work is fine.  cannot pin point it on anything i eat, having fatique, night sweats, headaches, spats of constipation and diarrhea, weight loss, loss of appet., and nausea.  i have had gastric bypass, i have been diagnosed with polycystic ovarian syndrome and endometrosis.  and i am sick of being sick.  i just dont know whats wrong and i'm sick of people starting to not believe me because "blood work is fine"? someone anyone please help!!!!!!!!

[panhandle]

My pcp has scheduled me for mri with contrast and referred me to an infectious disease doctor in early March.  Had a good long talk with her and she said we would get to the bottom of things.  Had CBC that showed elevated liver enzymes but everything else was within normal limits.  I will keep everyone posted when we figure things out.  Thanks again to Dr. Kevin and to all of you that replied.

[robkat]

i have had the same symptoms with pain, fever and weight loss. my doc ordered a ct scan and when spots were found then ordered a ultrasound which also indicated i had lesions on my liver and kidney, i go back to the doctor today to see what he thinks about this, my radiologist saya that they are beneign and my doctor will probally just follow me for a few months. although mine has grown bigger in just a few weeks. kat

[Tee-Lee]

It almost sounds like what my son had. He had a kidney transplant and he contracted EBV/common disease, which led to PTLD, a type of Lymphoma because he was taking the anti-rejection drugs,to prevent him from rejecting his transplanted kidney. He was having pain in his head, stomach pain, sore mouth/throat, fevers and lost weight. He had to receive chemtheraphy and reduce his anti-rejection drugs.

[Kalio1]

Did they do a full blood work up on your liver? Do you know what the results were? How were your liver enzymes?  

While it's true we don't have pain receptors in our liver ( which is why docs say it isn't your liver hurting) the capsule surrounding your liver can feel pain and if your liver is inflamed, it can hurt. Are you seeing a liver specialist?

I'd see a good heptologist and get more information about your blood test results you have had.

[Kevin Pho, MD]

You have had a pretty comprehensive evaluation.  With the ultrasound and CT scan, it is unlikely to miss large lesions.  A hemangioma is the most likely diagnosis with the tests you have had.  If there continues to be an unclear diagnosis, the MRI should be considered sooner rather than later.

Rapidly growing hemangiomas, or those larger than 5cm should be evaluated for surgical treatment.  

These options can be discussed with your personal physician.  A GI evaluation at a major academic medical center can be considered.

Followup with your personal physician is essential.

This answer is not intended as and does not substitute for medical advice - the information presented is for patient education only. Please see your personal physician for further evaluation of your individual case.

Kevin, M.D.
kevinmd_

[anna106]

I also have been having abd. pain I went to the E.R. and they found nothing that can be causing the pain, however they did find a mass on my liver 5cm I am having a MRI done tomorrow. I work in a clinic with a renal Dr she thinks it's a HEMANGIOMA and said that it would not cause pain. I have been reading all the comments about this thing and it seems unreal that we all have the same symptoms and DRS" say it can't be related. I DON'T UNDERSTAND.