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.

Good morning @mamafluh and welcome to Mayo Clinic Connect. I’m sorry you’re still dealing with covid-19 and the after effects. Many folks continue to have problems. There are a couple of discussions you may want to read through to see how other people have coped. You can also e-meet other members who may be able to answer your specific questions.
https://connect.mayoclinic.org/group/post-covid-recovery-covid-19/
You said you’re also experiencing multiple autoimmune diseases. May i ask what they are?

REPLY

How do the doctors differintiate all 80 autoammune disorders, has to be a challenge.

REPLY
@hmccarth5

How do the doctors differintiate all 80 autoammune disorders, has to be a challenge.

Jump to this post

There’s no single test to diagnose autoimmune disease. Doctors review symptoms combined with specific blood markers and in some cases, a tissue biopsy. Diagnosis can be difficult because these symptoms can come from other common conditions. Many people report that it can be a long journey before getting a confirmed diagnosis.

Has this been your experience, @hmccarth5?

REPLY
@hmccarth5

How do the doctors differintiate all 80 autoammune disorders, has to be a challenge.

Jump to this post

@hmccarth5 i, too, have been noticing the rise in autoimmune diseases. The following article says a little about the issue, but not really enough. It is nice to know that research is looking into this.
https://www.nature.com/articles/d41586-021-01834-x
This book is very interesting and really opened my eyes!
https://donnajacksonnakazawa.com/autoimmune-epidemic/
Have you tried checking ‘rise in autoimmune diseases’ on Google Scholar?

REPLY
@becsbuddy

Good morning @mamafluh and welcome to Mayo Clinic Connect. I’m sorry you’re still dealing with covid-19 and the after effects. Many folks continue to have problems. There are a couple of discussions you may want to read through to see how other people have coped. You can also e-meet other members who may be able to answer your specific questions.
https://connect.mayoclinic.org/group/post-covid-recovery-covid-19/
You said you’re also experiencing multiple autoimmune diseases. May i ask what they are?

Jump to this post

This is my first try at connect…are there others who have multiple autoimmune diseases? I am not who you asked but I have five so thought I’d respond ..in order of diagnosis, over 50 years, I have or had erythema nodosum, MS, sarcoidosis. Hashimoto, and anti phospholipid syndrome.

REPLY
@shani

This is my first try at connect…are there others who have multiple autoimmune diseases? I am not who you asked but I have five so thought I’d respond ..in order of diagnosis, over 50 years, I have or had erythema nodosum, MS, sarcoidosis. Hashimoto, and anti phospholipid syndrome.

Jump to this post

Good morning @shani . You are really dealing with a lot. I’m hoping you have a great doctor who listens to you and provides proper treatment. Is there something specific we can help with?

REPLY
@shani

This is my first try at connect…are there others who have multiple autoimmune diseases? I am not who you asked but I have five so thought I’d respond ..in order of diagnosis, over 50 years, I have or had erythema nodosum, MS, sarcoidosis. Hashimoto, and anti phospholipid syndrome.

Jump to this post

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

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

Hi Philip, if you haven't already, I hope that you'll share your disappointing experience with the Office of Patient Experience.
Mayo Clinic Office of Patient Experience
https://www.mayoclinic.org/about-mayo-clinic/patient-experience (online form)
Phone: 844-544-0036 (toll free)
Email: opx@mayo.edu

You're quite right that mistakes do happen in medical records. Some research has shown that the number can be as high as 1 in 5 patients find errors in the health records. The advantage today over times past is that we now have access to electronically shared medical records and we can work with our health care team to correct the errors. There are many advantages to electronic health records including accuracy of information in partnership with the patient.

Having shared access to your health records should improve communication between the patient and providers. It is regrettable that you experienced the opposite and felt like technology reduced and even replaced discussions you were expecting and should have had with the care team. I can assure you that this is not standard of practice at Mayo Clinic. U.S. News & World Report recognizes Mayo Clinic as the No. 1 hospital overall and top ranked in fourteen specialties including complex care that often requires medical experts from more than one specialty. (Little comfort now, I know.)

For this reason, I strongly encourage you to contact the Office of Patient Experience.

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

Visit a gastroenterologist. for the esophageal issues. Lots of us with autoimmune issues have continuing issues with all that goes on with that part of the body. I have MCTD/Scleraderma, etc. I am on Pantoprozole, had the tip test. I often carry hard copies of reports as my doctors are part of two different electronic systems and there's fear of viruses. Some of the busy doctors have to accept you into their practice, and so it is a sort of triage, unfortunately. https://www.uclahealth.org/esophageal-center/achalasia

REPLY
@marye2

Visit a gastroenterologist. for the esophageal issues. Lots of us with autoimmune issues have continuing issues with all that goes on with that part of the body. I have MCTD/Scleraderma, etc. I am on Pantoprozole, had the tip test. I often carry hard copies of reports as my doctors are part of two different electronic systems and there's fear of viruses. Some of the busy doctors have to accept you into their practice, and so it is a sort of triage, unfortunately. https://www.uclahealth.org/esophageal-center/achalasia

Jump to this post

Thanks for your reply, but I seem to have exhausted what gastroenterologist can do at this point. What I really need at this point is a neurogastroenterologist, but I think the closest to me is at Stanford.

REPLY
@shack76

Thanks for your reply, but I seem to have exhausted what gastroenterologist can do at this point. What I really need at this point is a neurogastroenterologist, but I think the closest to me is at Stanford.

Jump to this post

Glad you found that out! Best of luck on the journey. Finding the right sort of doctor can be a challenge, sometimes. For my issues, I find good relief with advice from webmd GERD triggers. There might be something useful there.

REPLY
Please sign in or register to post a reply.
  Request Appointment