Swollen upper leg, enlarged lymph nodes

[14n]

I've had progressively worsening symptoms in my left leg since June. I initially noticed what appeared to be a bulge in the area of a femoral hernia. The surgeon determined that there was no hernia, but noticed an enlarged lymph node on ultrasound and noted that there may be some swelling or fatty deposit around it. The doctors weren't initially concerned about the enlarged lymph node, explaining that it may have just been a lingering effect from a suspected tick-borne illness I had a year earlier that caused multiple nodes to swell much larger. Shortly after, I began noticing some pain and stiffness in the area, and significant physical activity would cause swelling between the hip and knee, as well as cause the muscles in that leg to tire quicker than the muscles in my right leg. A course of steroids (prednisone) for poison ivy had the side effect of temporarily eliminating the pain and stiffness, but not the bulge. In mid-August, I went on a 3-day hike after having limited my activity somewhat to try to not aggravate the issue going into the hike. In the second half day 2 (the most difficult day) I noticed my leg (knee to hip) was swelling significantly. Since roughly that time, there has consistently been some swelling at all times, and the original bulge is no longer distinguishable from the larger swelling. Any physical activity since has caused the swelling to flare up significantly, including walking more than a mile or two, or even being on my feet for a long time. No swelling has been noticed below the knee. Blood and urine labs were normal about a week or so after the hike, and my physical activity has been significantly limited since late August. Then in mid-September a blood lab showed very slight anemia (12.9, low of normal range is 13.0) and slightly elevated platelets. A veinous doppler ultrasound to check for DVT blood clots showed nothing unusual, and CT scans of the upper leg and lower abdomen showed 3 enlarged lymph nodes and subcutaneous swelling in the leg and lower abdomen (notably not muscular swelling), but nothing else unusual. Lymph nodes were removed for biopsy, and pathology was benign and cultures have not shown evidence of infection. I'm still recovering from surgery, with lymphatic fluid drainage continuing almost 3 weeks after. The surgeon suspects a lymphatic blockage causing lymphedema, but has admitted not having much idea what would be causing it. I'm supposed to see a vascular surgeon, who he says will likely do imaging of the lymphatic system.

Has anyone had a similar experience or treated a similar condition? And what did it turn out to be? So far, every doctor I've seen seems to not have much idea what's causing my issue, so if anyone has found a diagnosis from a similar condition, I'd like to ask my doctors whether that might be a possibility of what I'm experiencing.

[SassyLassie]

Hello~I am sorry you are experiencing all this. None of us here are doctors however, it is wise that you will be seeing a specialist, hopefully they will be able to help you.