By Jeanne Solnordal
It all started with pain in feet, diagnosed with plantar fasciitis. It never got better. I had Severe fatigue. I was referred to rheumatologist who noticed vasculitis spots and ran a cryoglobulinemia blood test. Bingo positive. But why did I have cryoglobulinemia?
They began running tests to find a primary cause. In the meantime, I had a migraine that was so severe that it presented as a stroke. I had to go to the ER as I could not walk or talk. I was hospitalized for a week. I was assigned to meet with a neurologist. He still works with me to keep my migraines under control. That was 2009.
The rheumatologist diagnosed me with seronegative rheumatoid arthritis and put me on Enbrel, plaquenil and methotrexate. I felt much better. I have had a few medical things since, bell’s palsy, mouth blisters, severe migraines, then a couple of years ago neuropathy. Excruciating neuropathy. I maxed out on gabapentin and needed opiates. I attended chronic pain management classes. They could find no reason for the neuropathy.
This December I developed a migraine that required an ER visit, 2 days later I was back because my lymph nodes were bulging out of my neck. The neck surgeon stated he had never seen lymph nodes that large. A month of antibiotics, two weeks steroids and they did not subside. They did a needle biopsy with no result , so they took out a lymph node for biopsy. It came back clean except for an old epstein barr virus. I am still being followed by infectious disease. When I had my visit with my rheumie my cryos test was positive again this time with a positive RA factor. So did I have a disease that set off my cryos or did my cryos cause all that lymph node swelling? No one knows.
The goal now is to regain control of the cryos with Rituxan as the Enbrel appears to no longer to be working. We are also hoping it will reduce some of the neuropathic pain. At the moment I feel like I always have the flu minus the head cold symptoms. My body always aches. My neuropathy is very painful and I’m always tired. My nose bleeds a lot so I constantly have to put Vaseline or something of the kind in it. Depo Medrol makes me feel better but only for about 10 days. I hope Rituxan helps but have I no clue what dosage to ask for. I do not have HepC. Clinically I present like a lymphoma patient but lymphoma did not show up in the lymph node tested. So they are watching my lymph nodes. They are always swollen. I also have food sensitivities, light sensitivities, kidney stones and Type 2 diabetes caused from all the prednisone I had to take. I’m very active when I am not having a flare. My temperature tolerance is about 71 degrees fahrenheit. I have a new rheumatologist who does not believe that I have Rheumatoid Arthritis and changed my diagnosis to cyroglobulinemia and cryoglobuleminic vasculitis. But either way my RA factor is positive. I guess that means I just have an autoimmune disorder? I’ll reserve judgment on this for now as she also tried telling me I had fibromyalgia and not cryoglobulinemia. Now she believes I have cryo.