Multiple Autoimmune Diseases & Post Covid

6 weeks since catching Covid. Im having a major flare. Started having full body joint pains at an 8-9 pain level (never had joint issues before). Currently only diagnosed Castleman disease which is a very rare condition affecting the lymphatic system, kidneys, and liver.

Neuropathy went moderate to severe in hands and feet. Also have anemia and likely a kidney flare. Currently going through medical testing to check all of my levels and figure out if i have arthritis of some sort. Going to have to quit my job. Aged 25. Im not on any sort of disability because test results fluctuate positive and negative like a light switch. One minute youre supposed to be in ICU other months nothing is wrong according to tests. Tricky illness.

What is Castleman Disease?

I have all the same issues. I had an MRI without contrast and took a SAGE test, EMG, and nothing showed. I did have Fibromyalgia for about 16 years before COVID in Feb 2020. This is 10x worse that my worst days with Fibro. Every system and major organ has been affected in some way. No answers. I have a rheumatologist that is planning to retire and said he isn't staying current! No other rheumatologist in area take me because I don't have any dx other than Fibromyalgia, OS, and Osteprosis. I really feel I have something in autoimmune and Neurological going on. After a 10th wait I have an appt February 28th at a Post-CoV-2 Clinic. I prayer it is the beginning to some validation and help! My mom had Lupus, Sojourn. RA, and other major issues. Stay in touch to share info!

Thank you and I also think having excellent docs in every specialty plus PCP is most important. I have no specific issue , but certainly is nice seeing this little community, so looking forward to being a part.

@feb. Kathy, that sounds so difficult and frustrating! Are you working with your primary care doctor to try to figure things out? Would your current rheumatologist refer you to a rheumatologist that she knows, instead of you doing the searching? How about major medical centers or university hospitals in your area? Four years ago, when i got very ill, my husband picked up the phone and called UCHealth in Denver. Doctors there were much more knowledgeable.
Keep searching for a doctor while you wait for your appointment at the post-Covid Clinic. Will you do that and then let me know what what you learn?

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

Hello @nnumba2, Welcome to Connect. I know it has to be extremely difficult and stressful dealing with everyday life when you have such a rare condition like MCD. I do think a symptom diary is a great idea and will help with any upcoming doctor appointments. there is a site with a lot of good tips for communicating with your doctors that you might find helpful - https://patientrevolution.org/visit-tools

I'm not sure if you already have seen these websites but thought I would share them just in case.
-- Castleman Disease Collaborative Network: https://cdcn.org/physicians-researchers/
-- Castleman Disease - NORD: https://rarediseases.info.nih.gov/diseases/9644/multicentric-castleman-disease

There is also an older discussion that might be helpful to read through the posts.
-- Castleman Disease: https://connect.mayoclinic.org/discussion/castlemans-disease-1/

I'm not sure if it's an option but have you thought about seeking help at a major teaching hospital or health facility?

@lemmy2022 Lemmy, I feel sad for you. I have some of the same stuff, and at 81 years, I am just now learning what I have. I have seen over 100 mds, DOs, etc, and am only now learning. But first, a couple words of caution. 1. Do not trust anyone with anything you can not yourself verify. Medicare, clinics, whatever. I trusted a clinic on the Oregon coast and got caught in a web of "bait and switch", the oldest fraud in the book. Medicare told me Medicare would cover the cost of the work, They gave me the name of the clinic to use, so I did. Then the clinic subbed an irrelevant process without telling me or Medicare or AARP, Medicare will now not cover it, Now the clinic is talking about suing me because Medicare says they will not cover any of it. Sounds like politics.
2. Always be aware you may have a bucketfull of disorders and diseases. I have about several thousand genes marked as pathogenic, malignant, unknown significance, etc. The Gelsolin/LGMDc4-2m I have puts a protein-cancer fibril in every cell in your body to mess with the Actin Web. Then other pathogenic genes come along and invade at the weak spots. I have had 53 cancer-related surgeries and processes, many of which could have been avoided if I had known they would do no permanent good.
3. For most purposes, over-the-counter meds are at least as good as prescription. I spend a lot of money on acetaminophen, aspirin, vitamins, Novolin R, guaifenesin, etc. Of course, I also burn a lot on levothyroxin, Methotrexate, etc.
4. I also keep good records. I use the Abbott LibreView 14day Glucose monitor 4x every day, plus O2, Blood pressure, pulse, weight scales, etc, many times every day. And I track most of it in my book.
5. Anyway, just be careful, and protect yourself from scam artists.
oldkarl

yes thank you im part of the cdcn network as well as the fb group has 2 of the specialists in it.

Could the skin issue be Vasculitis?