I am a 32 year old female, and over the last 2 years have significantly gotten worst. October 2024 I went to the ER due to upper left abdominal pain, at that point my spleen was 16cm. My symptoms proceeded and started to be left/right upper abdominal pain, which after a repeat CT in the ER showed my spleen at 18cm and a small sub-centimeter lesion on my liver, in segment 6. I was then referred to hematologist who ordered a PET scan, as he was pretty sure I had splenic lymphoma. My PET scan did not reveal that; however showed my spleen still at 18cm and my liver now at 21cm. I have since been sent to an oncologist surgeon who performed an exploratory laparoscopy to see if he could determine the cause, he found nothing. I have seen gynecologist, GI doctor (had a US of the rectum and colonoscop, as per the oncologist surgeons request), have seen rheumatology due to me having psoriasis (long standing for over 15+ years) however ANA was negative the last 2 years. Which was strange as years prior of always being positive. rheumatology cleared me from their stand point. Saw them immunologist who could only determine that I had a 40% protection rate after getting the prevnar vaccine and retesting titers. Even was sent to infectious disease doctor after possibly thinking childhood infection of EBV could be causing chronic EBV, as my blood test for that was over 360. However infectious disease doctor said that was not a thing. So was then sent back to hematologist, begging for answers. He performed a BMBx which per the laboratory was insufficient on the core sample, but it was able to tell me I have no iron storage in my bone marrow, but another symptom with no reason why. I have now paid for test out of pocket in hopes it would give my doctors answers, like an MRI of my back which showed 2 spinal compressions in my thoracic. Testing to rule out lymphomas/leukemias. and still nothing.

At  this point the upper abdomen pain is unbearable, the excruciating lower back pain that almost feels like a dog with a bone especially at night waking me up. Fatigue that never gets better. Memory loss Increasing. Legs giving out more when walking. And after all of that, the longest 2 years—I kept telling my doctors I felt a  pea sized lump/knot in my lumbar area, where the lower back pain originates from. It also started with a lot of vascular changes there. They never could see anything, but within a matter of 5 weeks I now have a small lump on the lower right, which then was followed by a lump directly across the spine. And then another small one on the left. I can barely sit more than 10 mins without feet going numb. I’m starting to have sharp, brief lived headaches bilateral behind my ears accompanied with a rhythmic whooshing sound in my ears, and dizziness. 

  
I really really need answers. I am s mom to 5 littles who need me and I can’t spend my life in chronic pain like this, with no treatments, no answers, and no doctor listening to me  when I say ”i know my labs are normal, but I'm not fine”. 

  
\*the photo is of my back currently, ill attach a photo of my back 5 weeks ago for comparison

32 yo female, medical mystery—desperate for answers