Referral to Mayo 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.

Interested in more discussions like this? Go to the Autoimmune Diseases group.

@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 💲💲💲

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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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I am sorry that you got denied an appointment. This past Friday, I too was denied an appointment because my case was too complex and they didn't have the appropriate specialist's on staff. I do not have an official diagnosis,. I was just asking for an appointment to get a diagnosis, so how they knew they didn't have the appropriate doctor is beyond me. Plus, I too thought we were supposed to go to Mayo when our doctors didn't know what else to do. It looks like we need to find a new miracle hospital to help us. You will be in my prayers! Hopefully there is some measure of comfort knowing that you are not alone.

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Good Morning.
I am posting today to offer those of you with undiagnosed diseases a sliver of hope. There is another path to answers, but it will take persistence, a significant personal investment in time, and some luck. The effort will not guarantee you acceptance into the program. So, you will need to mentally prepare for that before making this investment!

The National Institute of Health (NIH) Bethesda, MD is an amazing institution, hosting clinical research studies aimed at diagnosing rare, undiagnosed illnesses. The NIH has a Undiagnosed Disease Network (UDN), which consists of seven (7) clinical hospitals nationwide, consisting of a consortium of specialty doctors (the crème de la crème) from all over the world to conduct clinical research on qualified patients (young and old) from all over the world. Although your testing information is used for their "Studies", you the patient leave with a plethora of valuable information and/or possibly a cure for your ailment. Because its a research facility, traditional insurance constraints will not dictate your care. NIH is "Medicine for Passion/Science", not "Medicine for Profit".

Traditional Insurance dictate care. This cultivates a "treat the symptoms" mentality. Insurance Profit will not allow for exploratory testing to actually "define" the "Root Cause". If you were cured, medicine for profit does not prosper. Because the NIH program is Government funded, their mission is to define the root cause and expend whichever resources are necessary to do so. This is accomplished thru funded clinical research projects. There is no cost to the patient (airfare, meals, hospital stay and/or medications). The price of admission is your data! As such, they have a significant vetting process with review board approval prior to be accepted into the UDN program.

The application process is exhaustive. It took me 2-months to complete the medical history portfolio and provide the supporting medical documentation for my child from the onset of birth until the application date. Hers was an extreme case, but the application process is daunting…it will "consume" you for several weeks. BUT, it was well worth the effort.

I posted on this forum in January 2019 about my 16-year old daughter who had struggled with Autoimmune/Auto Inflammatory Disease her entire life. Post-puberty (13), her symptoms escalated to extraordinary swelling and internal bleeding. The swelling in her face head and neck were so grotesque, she experienced necrosis on tissue on her face, inside her mouth and nasal cavities, disfiguring her face and robbing her of her senses of smell and taste.

At 16, the symptoms returned, this time the extraordinary swelling affected her face and head, causing the adipose tissue surrounding her optic nerves to swell, constricting the blood supply to her optic nerve, taking away her eyesight. Each reaction seems to get more severe, occurring with less reaction time, with increasingly dangerous effects to my child.

When granted an appointment at Mayo in January 2019, we were very excited at the prospect our case would finally get the attention it needed. Sadly, Mayo is not exempt from the "Medicine for Profit" constraints, and we felt as though we were just run thru their "puppy mill" with only the baseline attention to defining a root cause…hours and hours of interviews, a few tests and we never heard from anyone again. It was a colossal waste of our resources and time.

We found The NIH by posting our daughters story on Facebook, hoping someone, somewhere would say "this same thing happened to me". Although that did not happen, a family reached out to us o the NIH. Their hereditary blood disorder condition was not cured, but the extensive genetic research led them down a path to understand the physiological process which was creating the recurrence of their condition. As such, they were able to effectively treat the disorder and return to a semblance of normalcy.

Our family spent a week surrounded by 15-20 vasculitis, auto immune and auto inflammatory specialists. My daughter was their only patient responsibility. They researcher our application, had a plan form my child when we walked thru the door and exhausted every resource at their disposal to understand and diagnose her condition. Although the root cause of her outbreaks could not be determined, their extensive cancer and AIDS research led them to conduct lab testing of her cells, coupled with results of Whole Exome and genome sequencing, identify inflammatory markers in her body that NO ONE had ever tested for. These markers led them down a path to inhibitor drugs that would intervene in the body's immune response and theoretically stop the adverse reaction.

Today (6 months to the day we left NIH), she had another reaction. We are at the KU Medical Center PICU in Kansas City right now. The drugs given to my daughter were administered and successfully quelled the reaction. We still do not have a Root Cause or 100% Diagnosis or Cure, but NIH may have saved my daughter's life today.

Although I do not contribute to this forum, I do read it weekly. the mindless criticism of Mayo by some is mentally exhausting. But, given the circumstances of today, I encourage those of you who have not gotten the answers you seek, to access the NIH website at: https://www.nih.gov/

Do the research, find their ongoing and upcoming clinical studies and find the resolve to get yourself a spot in the clinic. It just may save your life.

Best wishes to you all. May you find the answers you are looking for!
Godspeed!

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@keithwalker

Good Morning.
I am posting today to offer those of you with undiagnosed diseases a sliver of hope. There is another path to answers, but it will take persistence, a significant personal investment in time, and some luck. The effort will not guarantee you acceptance into the program. So, you will need to mentally prepare for that before making this investment!

The National Institute of Health (NIH) Bethesda, MD is an amazing institution, hosting clinical research studies aimed at diagnosing rare, undiagnosed illnesses. The NIH has a Undiagnosed Disease Network (UDN), which consists of seven (7) clinical hospitals nationwide, consisting of a consortium of specialty doctors (the crème de la crème) from all over the world to conduct clinical research on qualified patients (young and old) from all over the world. Although your testing information is used for their "Studies", you the patient leave with a plethora of valuable information and/or possibly a cure for your ailment. Because its a research facility, traditional insurance constraints will not dictate your care. NIH is "Medicine for Passion/Science", not "Medicine for Profit".

Traditional Insurance dictate care. This cultivates a "treat the symptoms" mentality. Insurance Profit will not allow for exploratory testing to actually "define" the "Root Cause". If you were cured, medicine for profit does not prosper. Because the NIH program is Government funded, their mission is to define the root cause and expend whichever resources are necessary to do so. This is accomplished thru funded clinical research projects. There is no cost to the patient (airfare, meals, hospital stay and/or medications). The price of admission is your data! As such, they have a significant vetting process with review board approval prior to be accepted into the UDN program.

The application process is exhaustive. It took me 2-months to complete the medical history portfolio and provide the supporting medical documentation for my child from the onset of birth until the application date. Hers was an extreme case, but the application process is daunting…it will "consume" you for several weeks. BUT, it was well worth the effort.

I posted on this forum in January 2019 about my 16-year old daughter who had struggled with Autoimmune/Auto Inflammatory Disease her entire life. Post-puberty (13), her symptoms escalated to extraordinary swelling and internal bleeding. The swelling in her face head and neck were so grotesque, she experienced necrosis on tissue on her face, inside her mouth and nasal cavities, disfiguring her face and robbing her of her senses of smell and taste.

At 16, the symptoms returned, this time the extraordinary swelling affected her face and head, causing the adipose tissue surrounding her optic nerves to swell, constricting the blood supply to her optic nerve, taking away her eyesight. Each reaction seems to get more severe, occurring with less reaction time, with increasingly dangerous effects to my child.

When granted an appointment at Mayo in January 2019, we were very excited at the prospect our case would finally get the attention it needed. Sadly, Mayo is not exempt from the "Medicine for Profit" constraints, and we felt as though we were just run thru their "puppy mill" with only the baseline attention to defining a root cause…hours and hours of interviews, a few tests and we never heard from anyone again. It was a colossal waste of our resources and time.

We found The NIH by posting our daughters story on Facebook, hoping someone, somewhere would say "this same thing happened to me". Although that did not happen, a family reached out to us o the NIH. Their hereditary blood disorder condition was not cured, but the extensive genetic research led them down a path to understand the physiological process which was creating the recurrence of their condition. As such, they were able to effectively treat the disorder and return to a semblance of normalcy.

Our family spent a week surrounded by 15-20 vasculitis, auto immune and auto inflammatory specialists. My daughter was their only patient responsibility. They researcher our application, had a plan form my child when we walked thru the door and exhausted every resource at their disposal to understand and diagnose her condition. Although the root cause of her outbreaks could not be determined, their extensive cancer and AIDS research led them to conduct lab testing of her cells, coupled with results of Whole Exome and genome sequencing, identify inflammatory markers in her body that NO ONE had ever tested for. These markers led them down a path to inhibitor drugs that would intervene in the body's immune response and theoretically stop the adverse reaction.

Today (6 months to the day we left NIH), she had another reaction. We are at the KU Medical Center PICU in Kansas City right now. The drugs given to my daughter were administered and successfully quelled the reaction. We still do not have a Root Cause or 100% Diagnosis or Cure, but NIH may have saved my daughter's life today.

Although I do not contribute to this forum, I do read it weekly. the mindless criticism of Mayo by some is mentally exhausting. But, given the circumstances of today, I encourage those of you who have not gotten the answers you seek, to access the NIH website at: https://www.nih.gov/

Do the research, find their ongoing and upcoming clinical studies and find the resolve to get yourself a spot in the clinic. It just may save your life.

Best wishes to you all. May you find the answers you are looking for!
Godspeed!

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Keith, thank you so much for your post! I’m scheduled for an appointment at the Mayo Clinic, Dec. 5th. It took 4 1/2 years to get to a diagnosis. I’ve managed my own care and done all the research. I’m clear that I am privileged because I am a researcher and understand how to analyze data and determine next steps. But it is a lot when you can’t make your brain function the way it did before the onset of an unknown diagnosis and you are exhausted 24/7.

The truth is I’m believing the Mayo Clinic is my last stop and my life will return yo normal. I’m believing for a miracle. By all accounts, I’m already a miracle. Perhaps this information is for me to pass on to others, so they won’t have to almost die or suffer as long as I did. Again, thank you!

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