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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 | @migizii | Nov 21, 2021
In reply to @petuniamom567 "I have multiple diseases and wrote to Mayo asking for appointment with Primary Care Department thinking..." + (show)
@petuniamom567

I have multiple diseases and wrote to Mayo asking for appointment with Primary Care Department thinking they would play quarterback and direct me to physicians to see.Surprise.Answer was that no one could see me.Lesson learned, I guess is to contact doctor who is specialist in particular ailment. However, this would mean seeing about 5 physicians. Since my underlying disease is autoimmune, I thought a generalist would think about what was happening in my body and perhaps come to some creative conclusion which would
then send my in the proper direction. Great disappointment since Mayo is one of the greatest medical centers in the world. It seems that no one looks at the patient as a whole anymore. We are split into separate pieces and often physicians don't maintain contact with each other which would help solve what's happening. Perhaps I'm just repeating what was said more briefly right before my post. But in the ancient days, internists did this sort of thing. Great strides have been made, but someone needs to think about the whole person. Each disease is not happening on its own. Good luck to all of us with multiple problems.

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In reply to petuniamom567….@migizii…I also tried a few times over the years for this approach to no avail at Mayo, Rochester. I was told I must work with my PCP at my home location, which in my opinion does not serve as useful a purpose when your specialists are there.

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migizii | @migizii | Nov 21, 2021
In reply to @kathrynmc "I was seen at Mayo Clinic in Rochester MN in September of this year. I asked..." + (show)
@kathrynmc

I was seen at Mayo Clinic in Rochester MN in September of this year. I asked my Primary Doctor to call the Mayo Clinic Physicians referral line at 1-800-533-1564 to help get me a referral. My Doctor did this, then I was contacted by Mayo Clinic. I had to set up a Mayo Clinic account, then they sent me forms to fill out online to determine whether or not they would take my case. This was at the end of June, so it took three months to get my appointment, and I am grateful to been seen at Mayo, it is an amazing place. Kathryn

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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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2 replies
Kathryn M. Carroll | @kathrynmc | Nov 21, 2021
In reply to @migizii "In reply to @kathrynmc …. @migizi….I have never attempted going through my PCP for a primary..." + (show)
@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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Mentor
Becky, Volunteer Mentor | @becsbuddy | Nov 22, 2021
In reply to @migizii "In reply to @kathrynmc …. @migizi….I have never attempted going through my PCP for a primary..." + (show)
@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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1 reply
migizii | @migizii | Nov 23, 2021
In reply to @becsbuddy "@migizil. I understand that you’ve tried to go to Mayo for your health problems, but were..." + (show)
@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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petuniamom567 | @petuniamom567 | Nov 23, 2021
In reply to @becsbuddy "Hello @petuniamom567 How terribly disappointing to be turned down by Mayo Clinic. I’m sure you had..." + (show)
@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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