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jp93
09-16-2015, 07:00 AM
Hi

I am experiencing those symptoms after a biopsyand my doctor's are disregarding my symptoms. any information you can provide would be greatly appreciated.

thanks!

ladybud
09-16-2015, 07:20 AM
Since there was controversy over the biopsy result, especially if an entire node was not removed, I would contact the Mayo clinic and ask if the images can be looked at by their pathologists. If the images are digital, they can be sent by computer email.

All you need is the email address of the pathology department and the cooperation of he pathology department that read the tissue sample.

Reactive inflammation suggests viral infection such as mono (EBV), CMV,
or hepatitis. These can be confirmed by blood tests. The importance of removing an entire node cannot be stressed enough. I hope you get answers soon!

jp93
09-16-2015, 07:34 AM
Thank you for your quick reply Ladybud. There were 3 nodes removed however after looking at the pathology report only portions of the 3 nodes were tested. All blood tests have been normal (i've read that blood tests can be normal) but i am experiencing more symptoms. My PET scan didn't show activity in my groin area however it did show little activity in my neck area (nodes were removed from groin area) i'm assuming not enough activity for concern. Not sure what to think anymore. I tried to get a second opinion from a cancer center but they did not want to make an appointments based on all of my tests results which is the reason for the second opinion.

ladybud
09-16-2015, 08:00 AM
Were you specifically tested on blood for Epstein Barr virus, cytomegalovirus, and hepatitis? These are special tests, not the usual ones done for general screening. Do you have a cat? Cat scratch fever can cause systemic illness and large lymph nodes, usually starting 2-3 weeks after a cat scratch or bite. There are specific blood tests for that too. The nodes removed should be examined in entirety, and if the lab still has the specimens they should redo the sample using the entire nodes, not just a part. You can talk to the medical director of the pathology lab about that. It is good your PET scan showed no activity in groin, but I would keep a close check on your neck where activity did show up. The other possible thing to consider is some kind of autoimmune disorder such as lupus, which can cause all of your symptoms including enlarged lymph nodes. This can be checked out by specific blood tests too, not just the general ones. It often starts in teens/young adults, and primarily females. You can research this and ask to be checked by your Dr. Let us know what you find out, and I hope it is something not serious that goes away soon!

jp93
09-16-2015, 08:12 AM
I will definitely keep you posted on my progress. Hopefully a definite answer can be given soon. Take Care!

jen40
09-16-2015, 05:27 PM
It took 14 months but we did eventually get a diagnosis for my daughter...chronic appendicitis. A surgeon suggested it was likely and performed a laparoscopy which confirmed the diagnosis. After removal of the appendics, the abdominal pain and nausea stopped within a day or 2 of the surgery. She is still having fatigue issues but as the immunologist explained, her body was being slowly poisoned for 14 months, it will take time to recover and for all symptoms to go away.

Chronic appendicitis is an illness that is not well recognised, most doctors don't believe it exists which is why getting a diagnosis took so long.

Good luck