Multiple Autoimmune Diseases & Post Covid

Posted by mamafluh @mamafluh, Jan 7 10:34am

Has anyone else been having pain levels of 8-12 not normal. Things in pain, cognitive, insomnia, nerve issues, etc since having Covid?

Interested in more discussions like this? Go to the Autoimmune Diseases group.

@feb

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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@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?

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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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@nnumba2

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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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?

REPLY
@lemmy2022

I have Myositis for six years approx. I am now losing my teeth which is devastating ..predisone dose is ten mg for about a year. Doses were flexible before then. Also suffering hair loss and sight of one eye. Help!

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@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

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@johnbishop

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?

Jump to this post

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

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@shack76

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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Could the skin issue be Vasculitis?

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@nnumba2

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

Jump to this post

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..

REPLY
@shack76

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

Jump to this post

Phillip, there are lots of great Medical Centers with great reputations but that doesn’t NECESSARILY mean that all the docs have the same high standards so we must do our homework, be careful and optimistic, no matter where we go. My feeling is that if I walk out of an appointment feeling validated, safe and flying high, I have hit pay-dirt. If after a week, I still feel that way and the original problem is resolving, I can make another appointment and know that doc can be on my list of besties!

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@gillysmom

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..

Jump to this post

@gillysmom Guess I never gave boron a thought so I looked it up. Yes, it is essential to our health but can easily be acquired from our diet. One more reason to eat our spinach! I found this article on boron which may be of interest:
https://www.healthline.com/health/brains-bones-boron
Since you are taking boron as a supplement, do you know the safe dosage?

REPLY

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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@feb

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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Hi, @feb. wondering about you visit this week to the Post-COV-2 clinic. We’re you able to learn anything?

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@calygirl84

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.

Jump to this post

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

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