Rare disease turned cancer

Dedication: Everyone who has a rare disease

It was during a visit in 2014, to my pain management doctor to go over the results of my MRI, when I was scared to death because of a lesion that showed up on my sacrum. I ended up having 2 biopsies to confirm that I didn’t have cancer. After that, who wants to keep going to the cancer center?

In 2015, I woke up out of a good sleep to the worst pain in my right knee I’ve ever experienced in my life. I was taking a pain medication for my back but it seemed to aggravate my knee; just the one knee. On day two, the nerve in my knee would throb when I drank water or held my breath to take my asthma medicine. By morning, I couldn’t walk on that leg. I went to an Urgent Care and was diagnosed with bone spurs. They ordered me some prednisone to treat the inflammation and sent me on my way.

3 week later, my knee pain is back and in full effect. The prednisone should’ve lasted for 12 weeks. Now I’m worried. I was sent to see an Orthopedic Surgeon. Another mri was done of the knee and the surgeon believed that I had myeloma. My heart dropped to the floor. It was all my husband could do to stop me from falling out of my chair. The doctor sent the pathology report to another doctor who said it looked like myeloma but he couldn’t be certain. They ended up sending my sample from North Carolina to the Cleveland Clinic in Ohio to a former colleague who confirmed that it was Rosai Dorfman Disease.

Was first discovered by two pathologists, Juan Rosai and Ronald Dorfman ,in 1969.
This is a very rare disease that has now been recognized by the World Health Organization as a blood cancer. It definitely wasn’t what I was expecting to hear. Treatment has been nonexistent for me. I have a laundry list of health issues including hiv so taking chemotherapy and radiation is off the table. Some doctors are treating this disease like cancer because it mimics cancer so well. I’m thankful in a way because it is slow growing but I fear aggravating it and I want anyone going through this to know that if you are going through anything like this disease, be careful. It’s tricky but it retreats too. Doctors don’t know what triggers it and they don’t know what causes it to go into remission but it will come back. I’ve seen this disease several times before it ever showed up on my mri. I’ve seen it in my dental X-rays. I’ve had biopsies on both sides of my neck because of big lumps back in 1998. Please let your doctor know if you have any issues with swollen lymph nodes and if you have this disease, don’t let them put you on anything if you’re not exercising any problems. You don’t need to trigger aggression in this disease.

Photo credit: Images provided by the storyteller.

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Evie McAfee