Castleman disease is a very rare autoimmune condition of the lymphatic system. Can only be diagnosed by the removal of an enlarged lymph node or biopsy (my biopsy was inconclusive so I was diagnosed after surgery). Castleman nodes mimic cancer cells but lack an active component of cancer. There's only around 6,000 cases in the U.S. I was diagnosed last year after surgery pathology results. It causes inflammatory symptoms and renal problems. Right now im experiencing (RA, IBD, Peripheral Neuropathy, Muscle cramps, Brain fog, Severe Fatigue, an symptoms of Kidney Dysfunction via low urine output or excessive urination)

There are two types of CD. Unicentric (enlarged nodes in one area of the body, negative lab results with chronic flare symptoms or sometimes no symptoms). And Multicentric which is (enlarged in multiple areas of the body or detectable abnormal lab results). For now its largely in the research phase so there is no cure just treatment using chemotherapy. Most UCD patients dont get treatment primarily because of negative blood an marrow tests. Although sometimes if a doctor is concerned they will still try chemotherapy. The bulk of focus is on MCD patients as they actually have abnormal test results. Some UCD patients dont have symptoms but a good 70% have inflammatory symptoms with normal blood tests. Unfortunately im part of that UCD group. Went to the ER last night for severe abdominal pain (I was literally crying doubled over) was dismissed from the ER after normal test results. Were practically lyme disease patients at this point. Most of us are in the Castleman Disease facebook group. Lots of MCD patients on iv infusions while us UCD patients watch awkwardly on the sidelines.

Based on all my symptoms im supposed to be on disability right now, joint pain and neuropathy was so bad that i had to take off and can barely do my job. My hands and feet cramp really bad, I feel random electric shocks in them. I was given a steroid shot and gel for arthritis, very stiff and my joints feel weird an sensitive. Couldnt even roll over in bed and stand, the joint pain was so bad. First time EVER with joint pain. But as of last night's ER trip for IBD symptoms and concern for an infection, my labs are normal so im confused. Im a walking zombie as im always weak or fatigued, last nights doc said maybe i was tired from being up at 3am. ha ...ha.....haaa.........yea im scared to go to the doctor to report anything now. Im having doubts ill get disability as i cant work since this weird flare so im very concerned (not married, no children, live alone). But about 30 other diagnosed UCD patients expressed the same concerns on a fb post yesterday. Pretty strange phenomenon. We all agreed to start a symptom diary as research doctors are investing most funds into MCD currently and maybe a symptom diary will help doctors catch something. Dont know.

Also going to look into fungal infections