Referral to Mayo declined for Autoimmune or Unknown Condition

Posted by kspiel @kspiel, Dec 12, 2017

I’ve posted in this thread a few times, as my wife has been very and increasingly ill for 12 years. Her disease is debilitating, and like many of you in this group, she’s been labelled an attention seeker, a chronic complainer, etc., etc., etc. I am not certain that her illness is autoimmune, but I suspect it very strongly. Her symptoms are widespread (intestinal, epidermal, muscular/skeletal, and on and on). Recently, her family doctor in Canada, where we live, made a referral to Mayo which was highly detailed, chronicling her complicated medical history, progression of symptoms, and the day to day grim reality of this progressively treacherous disease. To our utter shock and disappointment, we received word today that the referral had passed through internal medicine, down to gastroenterology, and was, with regret, not accepted. According to the letter, they felt there was nothing to be done. I can’t say how disheartening this news is. A young and vibrant person that I love is ill and suffering desperately.

Our doctor has promised to write a strident letter of appeal. I called the international appointments office today, and the representative I spoke with said that she would be sure to resubmit our application, and advised that we wait until the doctor’s appeal is received also, so that that can be reviewed along with the referral. I am anxious to hear if anyone has a similar experience of at first being denied an appointment, and through contestation eventually received one. I fear that our window of opportunity to receive meaningful treatment is shrinking.

Liked by heatherg

@bryan_in_dallas

Thanks for the replies, but my posts were specifically about the Mayo Clinic. This site is called Connect.MayClinic. As I said, I’ve already seen multiple other specialists in Texas and sure I can keep doing that. My point is MAYO is where people go when the other doctors can’t figure it out. They promote themselves as the preeminent medical facility, with all the best doctors, for handing difficult medical conditions. I have a combination of difficult medical conditions, yet, they took a pass on me. I still find their decision both unbelievable and quite frustrating. I’m not interested in running all over the country to get 5th and 6th opinions. Again, thanks everybody, but no need to suggest other alternatives. Best regards. BD

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@bryan_in_dallas , I just want you to know that I'm very empathetic to what you are going through.

My health insurance is actually through the Mayo healthcare system in Wisconsin and Rochester is an hour away from me. (Its actually closer than the facility I go to here…I'm in a very rural area).

My fiance who has had three cervical fusions, the most recent one in January, and in Chicago as an emergency for fear of becoming paralyzed because the ER at Mayo in Rochester sent him home. We were in Chicago over the holidays and he was admitted from the ER with surgery the next day. Everything turned out very well.

We are both originally from Chicago but have been in WI for two years. Don't get me wrong, We have both gotten some excellent care at Mayo. I have five or six specialists that I see who have been great. My main concern that I'm hoping to see a neurologist in Rochester for is this severe iron in my brain. But with knowing what my fiance went through, I'm keeping my options open to send my records to Johns Hopkins, Stanford, Oxford in London…

I do wish you the very best and will keep you in my prayers!

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I was a patient at Mayo Clinic many years ago. I have a patient number and card. I was denied an appointment recently for the same condition that I was originally seen for. I incorrectly thought that once you were seen at Mayo for a condition you were always a patient.

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@missybrett12922

I was a patient at Mayo Clinic many years ago. I have a patient number and card. I was denied an appointment recently for the same condition that I was originally seen for. I incorrectly thought that once you were seen at Mayo for a condition you were always a patient.

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Hi @missybrett12922, welcome to Connect. I know getting an appointment can be frustrating, probably more so since you already have a Mayo Clinic number and have been seen by them for the same condition. I encourage you to call the Office of Patient Experience at Mayo Clinic.
Office of Patient Experience
8 a.m. to 5 p.m., Monday–Friday
507-284-4988

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I was just denied also. Need to find out why I have macular degeneration at Singh a young age. I will have my doctor try next. Six years ago I had no problem getting an appointment….nor even three years ago when I went back. So disheartened.

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If you get a referral from a Doctor who graduated from the Mayo Clinic, you will immediately be accepted. This is what I did, when he called to refer me the people at the Mayo told him that and within a week, I had an appointment. I'd suggest you find a doctor who graduated from the Mayo, inform them of your intentions and take it from there.

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@fox940

@kspiel You are not alone. I received an email on Monday and my referral was denied as well. I called yesterday morning and couldn’t be given a satisfactory answer on why I was denied appointment. I understand that Mayo sees millions of people a year and helps many people, but they certainly didn’t even attempt to help me. It has left a bad taste in my mouth as all I am trying to do is seek answers for the diagnosis I have been given of Chronic Pain Syndrome. No one can help me and it is disheartening, I can only help myself. When you go to Mayo’s website the Request an Appointment link is hard to miss and it is even on this site of “Request Appointment.” Underneath Request Appointment it needs to read “Maybe You’ll Get One'”

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It is best to have one of your medical specialist call to have physician consult. They should compile and forward lab results that are reflective of your most predominant symptoms as well as a comprehensive medical report, prior to their conversation with the appropriate doctor.

It took almost 4 1/2 years for me to be diagnosed with two extremely rare disorders. Although my case is “complicated” per the doctors, and I have a team of specialist, my neurologist contacted the Mayo Clinic; because my dominant symptoms were related to autonomic dysfunction. My diagnoses falls under the Neuro-Immunology sub-specialty. I think it would also have been appropriate for my Immunologist to contact them. My point is that I think it might help to focus on your main symptoms and think of the doctor who knows your journey the best and can tell your story from a medical perspective.

I hope this helps. I don’t know you but I am praying for all of you. I know what it is to suffer. Please remember that what we think, feel, and believe affects our health and becomes our reality. I believed I would find an answer and I now believe that I will be healed, despite being told the disorders are progressive and incurable. Doctors are perplexed at my current state, despite my having almost died, in April 2017. They are astounded that I am not bedridden, after going undiagnosed and untreated this long. Although everyday is a struggle, I have come a long way and believe I will get to the other side of this. I attribute my current condition to prayer and mediation, very clean eating, walking or movement of some kind 20 minutes at least 3-4 times per week, working through various childhood and adult trauma and restorative yoga.

Our bodies possess the capacity to heal itself, if we believe and begin to make changes that lead to health. Yes, it’s hard to think about doing anything when you feel so badly. But the human spirit is powerful! Food is medicine. So, perhaps start with eliminating processed foods, dairy, gluten, sugar, soy, oils except for avocado, coconut and olive oils. A plethora of research has concluded all these are inflammatory and bad if you have autoimmune disorders.

I also recommend the following books…if you haven’t already read them…from well-educated MD’s who have switched from traditional allopathic medicine to functional medicine, which looks for the why and not just the what of our conditions:

The Biology of Belief, Bruce Lipton

Mind Over Medicine, Lissa Rankin

Food: What the Heck Should I Eat, Mark Hyman

Sending Love and Light to you and praying that you not only find answers but you receive relief.

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@oldkarl

@drtapasgoswami “You ask How do you know that they ignored your issues ?” Simple.. If they did not deal in any way with what they found, or did not communicate with me some how about it, They were ignoring their advertised hippocritical oath, and should be dismissed from the program. I did not spend $15,000 just to be told “If you were actually sick with Amyloidosis you would be dead by now. We have seen nothing that says you are dead.” I asked for a hematologist, and saw about 20-30 other med personnel before I say a hematologist. I even had an MRI done on my heart which said “Left ventricle enlarged, but we assume cardiomyopathy, which can be safely ignored.” Yes, they did ignore everything almost they saw, including an enlarged liver, spleen, lungs, heart, thyroid,cerebellum, lymph nodes, prostate, bladder, kidneys, pancreas, misfolded protein, cornea disfunction, purpura on eyelids, fingers and toes, rheumatoid and psoriatic arthritis, chronic anemia, enlarged tongue, macular skin on arms, larynx, internal organ walls, Mayo has the prettiest building columns in the world, but seems to be a second rate clinic.

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😥 It's all about 💲💲💲

Liked by bryan_in_dallas

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That's why HMO is a bad insurance, only good for the healthy and young

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@fmgeorge

It is best to have one of your medical specialist call to have physician consult. They should compile and forward lab results that are reflective of your most predominant symptoms as well as a comprehensive medical report, prior to their conversation with the appropriate doctor.

It took almost 4 1/2 years for me to be diagnosed with two extremely rare disorders. Although my case is “complicated” per the doctors, and I have a team of specialist, my neurologist contacted the Mayo Clinic; because my dominant symptoms were related to autonomic dysfunction. My diagnoses falls under the Neuro-Immunology sub-specialty. I think it would also have been appropriate for my Immunologist to contact them. My point is that I think it might help to focus on your main symptoms and think of the doctor who knows your journey the best and can tell your story from a medical perspective.

I hope this helps. I don’t know you but I am praying for all of you. I know what it is to suffer. Please remember that what we think, feel, and believe affects our health and becomes our reality. I believed I would find an answer and I now believe that I will be healed, despite being told the disorders are progressive and incurable. Doctors are perplexed at my current state, despite my having almost died, in April 2017. They are astounded that I am not bedridden, after going undiagnosed and untreated this long. Although everyday is a struggle, I have come a long way and believe I will get to the other side of this. I attribute my current condition to prayer and mediation, very clean eating, walking or movement of some kind 20 minutes at least 3-4 times per week, working through various childhood and adult trauma and restorative yoga.

Our bodies possess the capacity to heal itself, if we believe and begin to make changes that lead to health. Yes, it’s hard to think about doing anything when you feel so badly. But the human spirit is powerful! Food is medicine. So, perhaps start with eliminating processed foods, dairy, gluten, sugar, soy, oils except for avocado, coconut and olive oils. A plethora of research has concluded all these are inflammatory and bad if you have autoimmune disorders.

I also recommend the following books…if you haven’t already read them…from well-educated MD’s who have switched from traditional allopathic medicine to functional medicine, which looks for the why and not just the what of our conditions:

The Biology of Belief, Bruce Lipton

Mind Over Medicine, Lissa Rankin

Food: What the Heck Should I Eat, Mark Hyman

Sending Love and Light to you and praying that you not only find answers but you receive relief.

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@sjevans14 and @fmgeorge, welcome to Connect.
While a person can self-refer to Mayo Clinic, you are quite right that it can be helpful to have a physician referral, as they can easily transfer clinical findings, reports, etc. @fmgeorge, you offer good practice strategies that are applicable whenever one transfer care to another specialist or seeks a second opinion.

Unfortunately Mayo Clinic has more requests for appointments than available openings. Appointments at Mayo Clinic are prioritized based on medical need. Availability depends on the nature and urgency of the problem and Mayo Clinic's ability to help (as determined by a Mayo Clinic doctor). The complexity of the medical condition, or for less complex conditions, the availability of care closer to home are important factors to consider.

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@colleenyoung

@sjevans14 and @fmgeorge, welcome to Connect.
While a person can self-refer to Mayo Clinic, you are quite right that it can be helpful to have a physician referral, as they can easily transfer clinical findings, reports, etc. @fmgeorge, you offer good practice strategies that are applicable whenever one transfer care to another specialist or seeks a second opinion.

Unfortunately Mayo Clinic has more requests for appointments than available openings. Appointments at Mayo Clinic are prioritized based on medical need. Availability depends on the nature and urgency of the problem and Mayo Clinic's ability to help (as determined by a Mayo Clinic doctor). The complexity of the medical condition, or for less complex conditions, the availability of care closer to home are important factors to consider.

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Good Morning Colleen,

Thanks for adding to my post. Information is power! I will make sure to share this information with those with whom I come in contact and are need of some direction and support.

Have a beautiful week and thank you for what you do.

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@fmgeorge

It is best to have one of your medical specialist call to have physician consult. They should compile and forward lab results that are reflective of your most predominant symptoms as well as a comprehensive medical report, prior to their conversation with the appropriate doctor.

It took almost 4 1/2 years for me to be diagnosed with two extremely rare disorders. Although my case is “complicated” per the doctors, and I have a team of specialist, my neurologist contacted the Mayo Clinic; because my dominant symptoms were related to autonomic dysfunction. My diagnoses falls under the Neuro-Immunology sub-specialty. I think it would also have been appropriate for my Immunologist to contact them. My point is that I think it might help to focus on your main symptoms and think of the doctor who knows your journey the best and can tell your story from a medical perspective.

I hope this helps. I don’t know you but I am praying for all of you. I know what it is to suffer. Please remember that what we think, feel, and believe affects our health and becomes our reality. I believed I would find an answer and I now believe that I will be healed, despite being told the disorders are progressive and incurable. Doctors are perplexed at my current state, despite my having almost died, in April 2017. They are astounded that I am not bedridden, after going undiagnosed and untreated this long. Although everyday is a struggle, I have come a long way and believe I will get to the other side of this. I attribute my current condition to prayer and mediation, very clean eating, walking or movement of some kind 20 minutes at least 3-4 times per week, working through various childhood and adult trauma and restorative yoga.

Our bodies possess the capacity to heal itself, if we believe and begin to make changes that lead to health. Yes, it’s hard to think about doing anything when you feel so badly. But the human spirit is powerful! Food is medicine. So, perhaps start with eliminating processed foods, dairy, gluten, sugar, soy, oils except for avocado, coconut and olive oils. A plethora of research has concluded all these are inflammatory and bad if you have autoimmune disorders.

I also recommend the following books…if you haven’t already read them…from well-educated MD’s who have switched from traditional allopathic medicine to functional medicine, which looks for the why and not just the what of our conditions:

The Biology of Belief, Bruce Lipton

Mind Over Medicine, Lissa Rankin

Food: What the Heck Should I Eat, Mark Hyman

Sending Love and Light to you and praying that you not only find answers but you receive relief.

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@fmgeorge such a wonderful and powerful response! Thank you. Think I, also, need to take your advice. Becky

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When I was first diagnosed with Wegener's I was told by my pcp not to go to Mayo because he would no longer be able to treat me. I waited and went to local doctors and have been being treated via Methotrexate first, then Imuran.

Now, those drugs are not working and my rhyumetologist wanted to start over on testing. I saw awesome commercials and knew a couple people that went to Mayo and was excited about going down for testing and diagnosis.

Then, I was denied an appointment because my case is too complex. I have too many symptoms and multiple autoimmune diseases so I would not be seen.

My Cardiopulmonary doc got mad and wrote a letter and said I truly needed to be seen. I called Mayo and they were going to call my doc and call me back. A week later, still nothing.

My rheumatologist is referring me to National Jewish Health in Denver. Hopefully they will see me even without all their fancy commercials and positive reviews.

I was extremely disappointed in Mayo and sorry that I got my hopes up for a place that is supposedly great at helping everyone yet denys people in need.

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@angelwolfe13

When I was first diagnosed with Wegener's I was told by my pcp not to go to Mayo because he would no longer be able to treat me. I waited and went to local doctors and have been being treated via Methotrexate first, then Imuran.

Now, those drugs are not working and my rhyumetologist wanted to start over on testing. I saw awesome commercials and knew a couple people that went to Mayo and was excited about going down for testing and diagnosis.

Then, I was denied an appointment because my case is too complex. I have too many symptoms and multiple autoimmune diseases so I would not be seen.

My Cardiopulmonary doc got mad and wrote a letter and said I truly needed to be seen. I called Mayo and they were going to call my doc and call me back. A week later, still nothing.

My rheumatologist is referring me to National Jewish Health in Denver. Hopefully they will see me even without all their fancy commercials and positive reviews.

I was extremely disappointed in Mayo and sorry that I got my hopes up for a place that is supposedly great at helping everyone yet denys people in need.

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Sorry to hear about your experience with Mayo, but can tell you that’s the exact same thing that happened to me. Really aggravating. I‘ve always heard Mayo is the lace to go when your local doctors run out of ideas. Definitely not the case. I wish you all the best going forward. ~B

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@angelwolfe13

When I was first diagnosed with Wegener's I was told by my pcp not to go to Mayo because he would no longer be able to treat me. I waited and went to local doctors and have been being treated via Methotrexate first, then Imuran.

Now, those drugs are not working and my rhyumetologist wanted to start over on testing. I saw awesome commercials and knew a couple people that went to Mayo and was excited about going down for testing and diagnosis.

Then, I was denied an appointment because my case is too complex. I have too many symptoms and multiple autoimmune diseases so I would not be seen.

My Cardiopulmonary doc got mad and wrote a letter and said I truly needed to be seen. I called Mayo and they were going to call my doc and call me back. A week later, still nothing.

My rheumatologist is referring me to National Jewish Health in Denver. Hopefully they will see me even without all their fancy commercials and positive reviews.

I was extremely disappointed in Mayo and sorry that I got my hopes up for a place that is supposedly great at helping everyone yet denys people in need.

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Hi @angelwolfe13, Like Bryan, I too am sorry to hear about your denial and lack of follow-up. If you're still interested in being seen at Mayo, I might suggest that you call again to get that call back. I completely understand however if you're done. National Jewish Health in Denver is an excellent facility.

I'd like to connect you with other members here on Connect who have experience with granulomatosis with polyangiitis, formerly called Wegener's granulomatosis. Please see this discussion:

> Groups > Autoimmune Diseases > GPA granulomatosis with polyangiitis
https://connect.mayoclinic.org/discussion/gpa-granulomatosis-with-polyangitis/

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@angelwolfe13

When I was first diagnosed with Wegener's I was told by my pcp not to go to Mayo because he would no longer be able to treat me. I waited and went to local doctors and have been being treated via Methotrexate first, then Imuran.

Now, those drugs are not working and my rhyumetologist wanted to start over on testing. I saw awesome commercials and knew a couple people that went to Mayo and was excited about going down for testing and diagnosis.

Then, I was denied an appointment because my case is too complex. I have too many symptoms and multiple autoimmune diseases so I would not be seen.

My Cardiopulmonary doc got mad and wrote a letter and said I truly needed to be seen. I called Mayo and they were going to call my doc and call me back. A week later, still nothing.

My rheumatologist is referring me to National Jewish Health in Denver. Hopefully they will see me even without all their fancy commercials and positive reviews.

I was extremely disappointed in Mayo and sorry that I got my hopes up for a place that is supposedly great at helping everyone yet denys people in need.

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@angelwolfe13 Gosh, this must be frustrating for you. How long ago were you diagnosed with Wegener's? I am really curious why your PCP would make that type of statement, that he would not "be able to treat you" if you went to Mayo. Then to read that Mayo was going to call your doctor. Your primary care who said he couldn't treat you [and perhaps is cooperating with Mayo], or your rheumatologist? We will be here when you are ready to let us know how we may assist you.
Ginger

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