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mamafluh (@mamafluh)

Multiple Autoimmune Diseases & Post Covid

Autoimmune Diseases | Last Active: Jun 20 9:07am | Replies (62)

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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.


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Replies to "I have a completely different set but I'm up to four; Graves, Celiacs, (I can't remember..."

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.

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

Could the skin issue be Vasculitis?

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!

Phillip: you need to keep looking until you find a proper doc who will earn your trust. He/she must be excellent in every way, not afraid to say ‘’ I don’t know’’, but willing to suggest alternatives and other specialists, makes you feel safe and respected. It might take some time, but keep looking, you and new doc are worth the effort.

Hi Philip. I just joined this site a minute ago and yours is the first thing I've read.
I'm sorry you had that experience. Some doctors don't realize that the size of their ego matters. In my case it is the neurologist who have outgrown their britches. I've seen many over the last 20 years and I've never been so categorically dismissed by any other group of people. After my last attempt to meet one ended with me crying in my car for over an hour before I felt well enough to drive home, I have taken a break from doctors. That was about 18 months ago.
So I've been out of my meds for about 6 months now and the SSA wants to schedule a disability progress review and I've moved to another state…so I've managed to get backed into a corner due to the anxiety I get from having to rely on the mercy of a medical professional who would probably rather be my coroner.
The insurance regards neuros as MS Specialists but almost all that I have been referred to specialized in geriatric sleep disorders and their knowledge of current Multiple Sclerosis treatments couldn't fill a thimble.
I hope you find a doctor that respects you and respects your wishes regarding treatment over his own personal prejudices.
Sometimes, no matter how educated your doctor is, the patient actually has a better understanding of what works for themselves. Especially when they live with a chronic condition. Some doctors will lie straight to your face instead of admitting that they won't prescribe you something because they think you look like you will abuse it. Better to know in the very beginning that they think you are unworthy of their time.
Really they have no business treating patients this way. If they don't respect me as a person then respect my diagnosis and deny me nothing that is routinely used and indicated for my disease.
And my first contribution on this site probably violated something so it may also be my last.
Good luck to you with your search.

Hi Phillip, I just saw your post and I’m curious about what was done for the achalasia? I was just dx along with severe malabsorption with 50lb weight loss since February.
I have horrible, chronic chest pain all the way round. I’m good as long as I don’t eat or drink, lol.

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