My Story:
On July 3rd, I noticed a tender spot in my right groin and a bit of a lump. Not huge, but it was there. Every day the lump seemed to grow. A few days later after the holiday and the weekend, I managed to get an appointment with my PCP. He examined the "lump" and immediately went next door to grab the surgeon so he could look at it because the PCP suspected it could be a hernia. The surgeon examined the "lump" and said he thought it to be a swollen lymph node but would get an ultra sound on the area just to be sure. I had the ultra sound and it was indeed a swollen lymph node. A very large lymph node surrounded by several other enlarged lymph nodes. The surgeon put me on antibiotics for a week and made me a return appointment after that time to check the lymph node again.
After a week, I came back and after he examined me, he came to the conclusion that he should biopsy the lymph node because it wasn't reducing much in size. So, the next morning, I went to the hospital and had the node surgically removed. He sent it off to pathology and told me that the lymph node was full of infection.
Three days after the surgery my leg was infected. I had redness the size of a dinner plate around the surgery size, it was swelled, and I was running a pretty high temp. I went to the ER. And they gave me a dose of IV antibiotics, after already having 2 doses while in the hospital 3 days earlier...plus I was on an oral antibiotic to. The ER administered the antibiotics, sent me home and instructed me to see my surgeon on Monday. So, Monday I went in to see him. He then preceded to give me a shot of antibiotics and had me come back the next day for another shot and another the next day as well. After the huge amount of antibiotics the infection cleared up.
A few days after all the antibiotics were done, I began to run a low grade fever again...and still felt very tired, and weak. Appetite was off also. In fact felt unable to eat much of anything. Went back to the Dr. and was finally referred to the Specialty Clinic for infectious disease.
I've had more blood tests than I can count, a chest xray, U/S on my spleen and liver, CT on my lung, U/S on my leg to check for clots. No one knows what is causing this, and they have all given up. They just say they don't know, go home and we'll see if you get better. I don't feel this is any kind of answer. This is not any way to treat a person who's life has basically been brought to a stand still because of "something". Some mystery that no one can seem to figure out. The infectious disease clinic said that clinically it "sounded" like cat scratch disease, however, it was not supported by the blood tests.
I now also have a swollen right leg and foot. The doctor said it is from having the lymph node removed...
My Feelings:
I need help. I need to know what's wrong with me. I need to get better. I'm a stay at home mother of 4 kids. I missed out on the whole summer and here comes fall and it isn't looking good for that either. My 7 year old daughter learned to ride a bike and I can't walk around the block with her while she rides her bike because I haven't the energy. Cleaning the house, cooking a meal....all the things I need to be doing, the things that were my life before are now simply chores that I have to will my way through.
I'm not a complainer or a whiner. I have a pretty high pain tolerance, and I can usually deal with things and move on. But this, this is something different. It won't allow me to just "deal with it and move on". It reminds me every day of how IT is in control of me now.
When the doctors told me they were basically DONE. That I needed to just go home and see if I get better, I felt abandoned, and betrayed. A month ago when I first walked into that clinic they were full of promise. They WOULD find out what is wrong...oh they said it may take quite a while to put the puzzle together but they would do it. Then I go in for my second appointment and I just get pushed out the door. I am treated like a hypochondriac, a complainer, whiner, someone who should be ignored. I questioned them, I cried, and in the end, I walked out the door feeling worse than ever because now, not only am I sick, but, they've given up on me. I'm a lone.
If anyone has any idea what could be going on, any thing that jumps out at you that this could possibly be, I'd appreciate knowing. I'm at a loss here!!
Thank you!