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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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@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.

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Replies to "This is my first try at connect...are there others who have multiple autoimmune diseases? I am..."

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?

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

Hi @shani, I’d like to add my welcome. You may also be interested in these related discussions:
– Erythema Nodosum https://connect.mayoclinic.org/discussion/erythema-nodosum/
– Recently diagnosed with Multiple sclerosis https://connect.mayoclinic.org/discussion/recently-diagnosed-with-multiple-sclerosis/
– Sarcoidosis Treatment: Tips for an effective path to better health https://connect.mayoclinic.org/discussion/sarcoidosis-treatment/
– Can Hashimoto’s disease cause dry mouth? https://connect.mayoclinic.org/discussion/hashimotos-and-dry-mouth/

Living with multiple automimmune conditions, I’m confident you would have tips and thoughts to offer others in these discussions.

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