Multiple Autoimmune Diseases & Post Covid

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

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I have a completely different set but I'm up to four; Graves, Celiacs, (I can't remember name of the being skin disorder it start with a V...I don't have a bad case) most recently achalasia. The issue I'm currently dealing with is I've had some sort of reaction do the surgery from achalasia that is effects my nerves. It was worsened by the Covid Vaccinations. It's very difficult to find doctors who will look at the whole pitchure.
To be completely transparent I tried going to Rochester in October and the doctors I dealt with were not interested. And I got no explanation. I don't even know why the place gives patients doctors email addresses through the portal because they don't answer. My experience at Mayo was awful and I would never suggest anyone go there for anything as complex as multiple autoimmune syndrome. The doctors I dealt with seemed to believe drawing electronic records replaces talking to patients. Some of the records they drew on me were wrong (Mistake in electronic records are not uncommon .Jow much I don't know, but the evidence from the clinic notes they wrote on the portal was clear that some of the records were incorrect) and because they didn't want to listen to us, they didn't understand the context of others diagnosis. In the end they gave me some advise that would have been dangerous. All I left was a large bill and little in the way of help. I probably started in the wrong department was never giving the chance to see anyone outside the department. Just what was set up in advance.
I hope this is not standard practice for the greatest hospital in the world (I'll never be back to find out) but what I experienced was complete assembling medicine. This completely the wrong approach for anyone dealing with a complex diagnosis. Drawing electronic records and cutting edge technology does not replace talking to your patient. They didn't even give me an appointment after they finished the testing, just a short phone call with Fellow.
These kind of experiences ruin patients trust in medicine and make it harder to go back to doctors.
My mistake was not researching the place before I went to Minnesota. If I had I would have stayed away. It looks like the University of Washington's Medical Center could be better, in the meantime there is a neurological pain specialist close to me worth trying.

Philip

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Has anyone had their boron levels checked. I recently read that aging and autoimmune disease makes it more difficult to assimilae boron from food, which is often low due to location or the use of fertilizers. That said, he described the assimilation of boron as requiring an adjunct mineral and siad that taking magnesium helps. I have just ordered boron for myself to see if taking some of that can rhelp educe body aches. Boron was cited in a book called the rthritis Cure..

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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!

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I have, I find post COVID symptoms still exist. I have Hoshimotos Thyroiditis, and Fibromyalgia, and migraines, and am a Legionaires survivor. Muscular skeletal issues have been exacerbated. My nerve pain is Worse. Another thing… . My Cardiologist, did a special blood test on me, to make sure I did not have any blood clots in my lungs. It’s just another very important thing to watch for.

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Could you let me know what kind of blood test from the cardiologist for the blood clots in lung?

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