Multiple autoimmune diseases

Posted by denadet @denadet, Jan 5, 2019

I was wondering if there were others with multiple diagnosis. I have 8 autoimmune diseases and 6 other long term illnesses. I can’t find anything on the internet for that many. Is that a wierd thing or just they don’t study that kinda thing.

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@migizii

In reply to @kathrynmc …. @migizi….I have never attempted going through my PCP for a primary care referral at Mayo….May I ask if you have extremely complicated issues you are seen there for, given my prior refusals (although I never tried going through my primary). Thx!

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I was diagnosed with Dermatomyositis with MDA5 antigen and Interstitial Lung Disease in January of this Year. Kathryn

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@migizii

In reply to @kathrynmc …. @migizi….I have never attempted going through my PCP for a primary care referral at Mayo….May I ask if you have extremely complicated issues you are seen there for, given my prior refusals (although I never tried going through my primary). Thx!

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@migizil. I understand that you’ve tried to go to Mayo for your health problems, but were turned down. You also said that you’ve never worked through your primary. This can be part of the problem. Most all specialists require a referral from the PCP. There are several reasons for this, the main one being that the specialist wants to know that the PCP is in the loop, and that the patient has not decided to see a specialist on their own. I know it can be a problem, but it’s there and we need to work with it.
Do you think you can see your PCP again and discuss your hopes of going to Mayo?

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@becsbuddy

@migizil. I understand that you’ve tried to go to Mayo for your health problems, but were turned down. You also said that you’ve never worked through your primary. This can be part of the problem. Most all specialists require a referral from the PCP. There are several reasons for this, the main one being that the specialist wants to know that the PCP is in the loop, and that the patient has not decided to see a specialist on their own. I know it can be a problem, but it’s there and we need to work with it.
Do you think you can see your PCP again and discuss your hopes of going to Mayo?

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I’m not sure who I’m replying to anymore but i see a number of specialists at Mayo and have not been turned down for those services. It has always been to be seen for primary care (ie, internal medicine or general practitioner). Thanks for keeping in touch.

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@becsbuddy

Hello @petuniamom567 How terribly disappointing to be turned down by Mayo Clinic. I’m sure you had your heart set on getting some answers. Unfortunately, Mayo is not able to see everyone. Many times they feel that the patient can get good care at home. It can be very difficult to accept, but it’s true.
You said that your underlying disease is autoimmune, but that you have other problems going on and no one can figure them out. You would probably like a team of doctors? Have any of your doctors explained why they can’t do this for you?
I would really like to see you get some help. Is there a university hospital near you that might be able to provide a team approach?

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team is definitely the answer. no teamwork here. patient has to be organizer and keep track of what's going on. means many phone calls. few doctors call back. triage nurses do. they're not always up on all the meds. doctors should be in contact with each other online so one knows what the other is doing and why. that system doesn't exist here. should exist everywhere. so, having many diseases at once is a challenge. tiring and time consuming.

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