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

Wow, I just received a similar email. I’ve suffered from constant, chronic pain, from head to toe, for nearly 15 years now. It was manageable for the first several years, but has become very debilitating, over that past 10 years, I’ve been to probably seen 20 different doctors (including 6 rheumatologists and 5 neurologist) in Dallas and had many tests run. No one can diagnose why my inflammation markers are alway 4 to 5x the max for normal or why my muscles, head, eyes, etc, ache all day, every day. Though I know I have osteoarthritis in my spine and hips, that doesn’t explain the total body pain. I’ve also been told I “probably” or “maybe” have Fibromyalgia, but I don’t have the classic hot spots and that still doesn’t explain my inflammation.

My current rheumatologist just calls it an “undiagnosed autoimmune disorder.” I’ve tried all kinds of meds and, and still take several. I also now see a pain management doctor for strong pain meds, but even with that, my daily pain is never, ever, less than a 6.

Throughout this process, I’ve also nearly died from ARDS (with no identified cause) and been thru prostate cancer undergoing brachytherapy to kill my prostate/cancer. My rheumatologist would like to try a biological, but they are not recommended if you’ve had major infections and/or cancer in the past 5 years. Well, I’ve had both.

Along the way, I’ve had more than one doctor suggest going to Mayo, but I was concerned about the cost and available time to go up there. That said, I’ve always thought of Mayo as my last resort. Surely they could get to the bottom of why I feel terrible all the time.

So, with my wife’s encouragement, I finally called to set up an appointment. The young man I talked to in the new appointment department was very friendly and encouraging. Last Friday, we spent over an hour and a half going thru my medical history and new patient questionnaires. He said I’d definitely hear back by the following Friday (tomorrow) with all the details on my appointment.

Concerned that maybe I gave them too much information, I called the internal medical department, back on Monday, to tell them though I provided every medical issue, I’ve ever had in my 56 years, I wanted to make sure they know the only real reason I’m coming to Mayo is to try to diagnose why I feel terrible. The young lady there, was also very nice and assured me they were reviewing my file in detail and would get back with an appointment in a couple days. She also said she’d add notes to my file, from our conversation, and make certain the doctors got that message.

So late yesterday, I received a brief email (with a “do not reply” notice) telling me they’ve rejected my appointment request because they have determined they can’t do anything for me. WTH? I had no idea that was even a possibility. Never even occurred to me. Like I said, Mayo was my last real hope at ever feeling any better, for the rest of my life, and they’ve taken a pass. I’m both shocked, frustrated and considerable sad.

For what it’s worth, I grew up in northeast Iowa…a couple hours from Mayo in Rochester…and always thought they were the best of the best, smartest of the smartest and would help anyone if their medical conditions became too complicated for other doctors to figure out. Boy was I wrong. It bring tears to my eyes just writing this. Thanks Mayo, have a great life. BD

REPLY
@bryan_in_dallas

Wow, I just received a similar email. I’ve suffered from constant, chronic pain, from head to toe, for nearly 15 years now. It was manageable for the first several years, but has become very debilitating, over that past 10 years, I’ve been to probably seen 20 different doctors (including 6 rheumatologists and 5 neurologist) in Dallas and had many tests run. No one can diagnose why my inflammation markers are alway 4 to 5x the max for normal or why my muscles, head, eyes, etc, ache all day, every day. Though I know I have osteoarthritis in my spine and hips, that doesn’t explain the total body pain. I’ve also been told I “probably” or “maybe” have Fibromyalgia, but I don’t have the classic hot spots and that still doesn’t explain my inflammation.

My current rheumatologist just calls it an “undiagnosed autoimmune disorder.” I’ve tried all kinds of meds and, and still take several. I also now see a pain management doctor for strong pain meds, but even with that, my daily pain is never, ever, less than a 6.

Throughout this process, I’ve also nearly died from ARDS (with no identified cause) and been thru prostate cancer undergoing brachytherapy to kill my prostate/cancer. My rheumatologist would like to try a biological, but they are not recommended if you’ve had major infections and/or cancer in the past 5 years. Well, I’ve had both.

Along the way, I’ve had more than one doctor suggest going to Mayo, but I was concerned about the cost and available time to go up there. That said, I’ve always thought of Mayo as my last resort. Surely they could get to the bottom of why I feel terrible all the time.

So, with my wife’s encouragement, I finally called to set up an appointment. The young man I talked to in the new appointment department was very friendly and encouraging. Last Friday, we spent over an hour and a half going thru my medical history and new patient questionnaires. He said I’d definitely hear back by the following Friday (tomorrow) with all the details on my appointment.

Concerned that maybe I gave them too much information, I called the internal medical department, back on Monday, to tell them though I provided every medical issue, I’ve ever had in my 56 years, I wanted to make sure they know the only real reason I’m coming to Mayo is to try to diagnose why I feel terrible. The young lady there, was also very nice and assured me they were reviewing my file in detail and would get back with an appointment in a couple days. She also said she’d add notes to my file, from our conversation, and make certain the doctors got that message.

So late yesterday, I received a brief email (with a “do not reply” notice) telling me they’ve rejected my appointment request because they have determined they can’t do anything for me. WTH? I had no idea that was even a possibility. Never even occurred to me. Like I said, Mayo was my last real hope at ever feeling any better, for the rest of my life, and they’ve taken a pass. I’m both shocked, frustrated and considerable sad.

For what it’s worth, I grew up in northeast Iowa…a couple hours from Mayo in Rochester…and always thought they were the best of the best, smartest of the smartest and would help anyone if their medical conditions became too complicated for other doctors to figure out. Boy was I wrong. It bring tears to my eyes just writing this. Thanks Mayo, have a great life. BD

Jump to this post

Hello @bryan_in_dallas, welcome to Connect. I'm really sorry to hear about your being denied a Mayo Appointment. Is there a chance you can possibly have a doctor give you a referral to Mayo Clinic to see if they are able to get an appointment for you? @colleenyoung our Connect director has provided some information that may be helpful when your appointment has been denied in another post here:
https://connect.mayoclinic.org/discussion/referral-to-mayo-declined/?pg=1#comment-83055
Please don't give up!

Liked by lioness, Lyn

REPLY
@bryan_in_dallas

Wow, I just received a similar email. I’ve suffered from constant, chronic pain, from head to toe, for nearly 15 years now. It was manageable for the first several years, but has become very debilitating, over that past 10 years, I’ve been to probably seen 20 different doctors (including 6 rheumatologists and 5 neurologist) in Dallas and had many tests run. No one can diagnose why my inflammation markers are alway 4 to 5x the max for normal or why my muscles, head, eyes, etc, ache all day, every day. Though I know I have osteoarthritis in my spine and hips, that doesn’t explain the total body pain. I’ve also been told I “probably” or “maybe” have Fibromyalgia, but I don’t have the classic hot spots and that still doesn’t explain my inflammation.

My current rheumatologist just calls it an “undiagnosed autoimmune disorder.” I’ve tried all kinds of meds and, and still take several. I also now see a pain management doctor for strong pain meds, but even with that, my daily pain is never, ever, less than a 6.

Throughout this process, I’ve also nearly died from ARDS (with no identified cause) and been thru prostate cancer undergoing brachytherapy to kill my prostate/cancer. My rheumatologist would like to try a biological, but they are not recommended if you’ve had major infections and/or cancer in the past 5 years. Well, I’ve had both.

Along the way, I’ve had more than one doctor suggest going to Mayo, but I was concerned about the cost and available time to go up there. That said, I’ve always thought of Mayo as my last resort. Surely they could get to the bottom of why I feel terrible all the time.

So, with my wife’s encouragement, I finally called to set up an appointment. The young man I talked to in the new appointment department was very friendly and encouraging. Last Friday, we spent over an hour and a half going thru my medical history and new patient questionnaires. He said I’d definitely hear back by the following Friday (tomorrow) with all the details on my appointment.

Concerned that maybe I gave them too much information, I called the internal medical department, back on Monday, to tell them though I provided every medical issue, I’ve ever had in my 56 years, I wanted to make sure they know the only real reason I’m coming to Mayo is to try to diagnose why I feel terrible. The young lady there, was also very nice and assured me they were reviewing my file in detail and would get back with an appointment in a couple days. She also said she’d add notes to my file, from our conversation, and make certain the doctors got that message.

So late yesterday, I received a brief email (with a “do not reply” notice) telling me they’ve rejected my appointment request because they have determined they can’t do anything for me. WTH? I had no idea that was even a possibility. Never even occurred to me. Like I said, Mayo was my last real hope at ever feeling any better, for the rest of my life, and they’ve taken a pass. I’m both shocked, frustrated and considerable sad.

For what it’s worth, I grew up in northeast Iowa…a couple hours from Mayo in Rochester…and always thought they were the best of the best, smartest of the smartest and would help anyone if their medical conditions became too complicated for other doctors to figure out. Boy was I wrong. It bring tears to my eyes just writing this. Thanks Mayo, have a great life. BD

Jump to this post

@bryan_in_dallas You mentioned arthritis in your spine and hips. Has this been evaluated with imaging? The reason I asked is because a spine problem that causes stenosis in the central canal can produce pain anywhere and all over the body below the level of damage. It would be easy for that cause to be missed. Have you had an injury like a whiplash? I am a Mayo spine surgery patient and I did have pain everywhere caused by spinal cord compression in my neck and the connection was missed by 5 surgeons before I came to Mayo. Also the respiratory distress you had without a known cause could have a link to a spine problem if there is some entrapment of the nerves that service your lungs. They emerge from the spine in the neck and travel through the chest to the lungs. Arthritis can also effect the spaces where the nerves exit the spine that are specific to those nerves. Spinal cord compression can affect everything and can be hard to trace which of the axons passing through that huge bundle are affected. Those would be physical issues. Possibly there could be more than one cause for your symptoms. There are inflammatory spine issues too like Ankylosing Spondylitis that cause overgrowth of bone in the spine. I know a patient who has this and in addition to spine surgeries, she sees a rheumatologist to try to prevent the effects that are causing the bone overgrowth. It is an inflammatory problem. Sometimes it takes years to connect our symptom history to a cause. Don't give up. The AS diagnosis does get missed a lot by doctors. I don't have it. My stenosis was caused by an injury. If you can work with your doctors to try to narrow it down a bit, it might lead you to a specialist type of interest where you could try to get another evaluation by contacting that specialty. Look up what your medical records say and terms and see if you get any hits on medical literature with similar cases. I did that, and found cases like mine that explained why the real diagnosis had been missed. I sent the medical literature I found in with my request and got an appointment with a neurosurgeon and I got the help I needed. https://www.mayoclinic.org/diseases-conditions/ankylosing-spondylitis/symptoms-causes/syc-20354808

REPLY
@johnbishop

Hello @bryan_in_dallas, welcome to Connect. I'm really sorry to hear about your being denied a Mayo Appointment. Is there a chance you can possibly have a doctor give you a referral to Mayo Clinic to see if they are able to get an appointment for you? @colleenyoung our Connect director has provided some information that may be helpful when your appointment has been denied in another post here:
https://connect.mayoclinic.org/discussion/referral-to-mayo-declined/?pg=1#comment-83055
Please don't give up!

Jump to this post

Sure, but they should have suggested that….along with the chance that they might not accept my request for an appointment, when I started the process. Now they have everything and have declined my request. I called the internal medicine group and politely asked that, along with expressing my exasperation, and all the guy kept saying is you’re better off with your local providers, they know you well. It’s complete bullshit, pardon my frankness. The folder’s closed.

REPLY
@jenniferhunter

@bryan_in_dallas You mentioned arthritis in your spine and hips. Has this been evaluated with imaging? The reason I asked is because a spine problem that causes stenosis in the central canal can produce pain anywhere and all over the body below the level of damage. It would be easy for that cause to be missed. Have you had an injury like a whiplash? I am a Mayo spine surgery patient and I did have pain everywhere caused by spinal cord compression in my neck and the connection was missed by 5 surgeons before I came to Mayo. Also the respiratory distress you had without a known cause could have a link to a spine problem if there is some entrapment of the nerves that service your lungs. They emerge from the spine in the neck and travel through the chest to the lungs. Arthritis can also effect the spaces where the nerves exit the spine that are specific to those nerves. Spinal cord compression can affect everything and can be hard to trace which of the axons passing through that huge bundle are affected. Those would be physical issues. Possibly there could be more than one cause for your symptoms. There are inflammatory spine issues too like Ankylosing Spondylitis that cause overgrowth of bone in the spine. I know a patient who has this and in addition to spine surgeries, she sees a rheumatologist to try to prevent the effects that are causing the bone overgrowth. It is an inflammatory problem. Sometimes it takes years to connect our symptom history to a cause. Don't give up. The AS diagnosis does get missed a lot by doctors. I don't have it. My stenosis was caused by an injury. If you can work with your doctors to try to narrow it down a bit, it might lead you to a specialist type of interest where you could try to get another evaluation by contacting that specialty. Look up what your medical records say and terms and see if you get any hits on medical literature with similar cases. I did that, and found cases like mine that explained why the real diagnosis had been missed. I sent the medical literature I found in with my request and got an appointment with a neurosurgeon and I got the help I needed. https://www.mayoclinic.org/diseases-conditions/ankylosing-spondylitis/symptoms-causes/syc-20354808

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Thank you for the detailed reply, but it’s all been checked. Like I said I’ve been to approx 20 doctors / specialists in Dallas. I’ve had MRIs and CT scenes of my brain, neck, lungs (incl mid back), lower back, tail bone sacroiliac joints. I’ve had xrays of a lot more, plus a spinal tap.

On a related note, I was very sick and diagnosed with JRA (systemic) in 1975, when I as 13. I’ve even gotten the old medical records fro University of Iowa and added them to my growing 3 inch thick folder of medical history.

On a side note, I’m a civil engineer…Vice President at an engineering firm…I read and research ferociously and I’m geared to analyzing and solving all sorts of problems. I asked tons of questions and, like I said I’m on my 6th rheumatologist (two of which have national credentials as being top in their field) and have seen 5 neurologist, plus pulmonary, vascular, cardio, and even a dermatologist who specializes in connective tissue / autos immune disorders. I’ve seen allergists, pain management doctors and on and on. Still none can determine why I hurt in every muscle of my body, every day, and have massive inflammation.

My Internist is married to a Rheumatologist, who is partners with one of those two nationally recognized rheumatologists that I mentioned. Everyone….EVERYONE…has run out of ideas. So Mayo was my last chance at trying to find a way to feel better. I’m 56 with high school aged kids and I now very painfully walk with a cane and can’t muster the strength or deal with the pain, after a long day of work, to even attend their baseball and volleyball games.

So Mayo thumps their huge chest claiming they take on the toughest of the tough cases…..which I truly lfeel I am. Yet, they took a pass. No interest….can’t help. Short email with do not reply. When I called their internal medicine group the nice young man told me they have more cases than capacity and blah, blah, blah. Sorry to sound bitter, but I am. I will also make it my passion to tell people what a crock of shit they are, when it gets to real difficult cases. This is un acceptable, and completely against EVERYTHING I’ve ever thought of the Mayo Clinic. Fuck ‘em. They’ve TOTALLY AND COMPLETELY LET ME DOWN.

REPLY
@bryan_in_dallas

Thank you for the detailed reply, but it’s all been checked. Like I said I’ve been to approx 20 doctors / specialists in Dallas. I’ve had MRIs and CT scenes of my brain, neck, lungs (incl mid back), lower back, tail bone sacroiliac joints. I’ve had xrays of a lot more, plus a spinal tap.

On a related note, I was very sick and diagnosed with JRA (systemic) in 1975, when I as 13. I’ve even gotten the old medical records fro University of Iowa and added them to my growing 3 inch thick folder of medical history.

On a side note, I’m a civil engineer…Vice President at an engineering firm…I read and research ferociously and I’m geared to analyzing and solving all sorts of problems. I asked tons of questions and, like I said I’m on my 6th rheumatologist (two of which have national credentials as being top in their field) and have seen 5 neurologist, plus pulmonary, vascular, cardio, and even a dermatologist who specializes in connective tissue / autos immune disorders. I’ve seen allergists, pain management doctors and on and on. Still none can determine why I hurt in every muscle of my body, every day, and have massive inflammation.

My Internist is married to a Rheumatologist, who is partners with one of those two nationally recognized rheumatologists that I mentioned. Everyone….EVERYONE…has run out of ideas. So Mayo was my last chance at trying to find a way to feel better. I’m 56 with high school aged kids and I now very painfully walk with a cane and can’t muster the strength or deal with the pain, after a long day of work, to even attend their baseball and volleyball games.

So Mayo thumps their huge chest claiming they take on the toughest of the tough cases…..which I truly lfeel I am. Yet, they took a pass. No interest….can’t help. Short email with do not reply. When I called their internal medicine group the nice young man told me they have more cases than capacity and blah, blah, blah. Sorry to sound bitter, but I am. I will also make it my passion to tell people what a crock of shit they are, when it gets to real difficult cases. This is un acceptable, and completely against EVERYTHING I’ve ever thought of the Mayo Clinic. Fuck ‘em. They’ve TOTALLY AND COMPLETELY LET ME DOWN.

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Hi @bryan_in_dallas, I cautiously reply to your post as I'm afraid that my response merely adds to the blah, blah, blah that you've already heard. Unfortunately, I do not have the power to grant you the appointment you desire. Your need is dire and your hopes were laser focused on Mayo Clinic. This is obviously completely and utterly frustrating and bitterly disappointing. I just want you to know that I read your posts and I hear you. These words ring hollow, I'm sure, but they are meant sincerely.

REPLY

Actually, I appreciate your reply Colleen. I guess my biggest gripe is Mayo shouldhave told me at the very beginning of my first call that they only accept certain cases and they can not guarantee I would get an appointment. They also should have suggested a doctor referral. I would have approached the entire process differently, had I known that. Now they have all my info and I’ve been denied an appointment. Then when I called their internal medicine group to ask why, all the guy kept saying was that I should “consult with my local provider, they know you better.” As I’ve already stated, I’ve been consulting with local doctors for years and they can’t figure it out. That’s why I finally called Mayo. So where do you go when the great and powerful Mayo says no? I guess you just resolve yourself to the fact you will feel terrible, the REST OF YOUR LIFE. That sucks.

REPLY
@bryan_in_dallas

Actually, I appreciate your reply Colleen. I guess my biggest gripe is Mayo shouldhave told me at the very beginning of my first call that they only accept certain cases and they can not guarantee I would get an appointment. They also should have suggested a doctor referral. I would have approached the entire process differently, had I known that. Now they have all my info and I’ve been denied an appointment. Then when I called their internal medicine group to ask why, all the guy kept saying was that I should “consult with my local provider, they know you better.” As I’ve already stated, I’ve been consulting with local doctors for years and they can’t figure it out. That’s why I finally called Mayo. So where do you go when the great and powerful Mayo says no? I guess you just resolve yourself to the fact you will feel terrible, the REST OF YOUR LIFE. That sucks.

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@bryan_in_dallas Medicine isn't perfect. I felt like this once too after doing every test a surgeon wanted for 5 months and then he would not offer surgery to fix my spine, and after I cried, I started over. In my life, I have had to figure things out for myself a few times that my doctors missed. I sought doctors outside of conventional medicine that have helped me a lot. That type of doctor ls in functional medicine or environmental medicine, and they look at the biochemistry of what is happening in the body instead of just trying to treat symptoms. I sent that information to you in a private message yesterday. I do know that carrying the burden of resentment will make your health worse and if you decide that your future will be terrible, you'll increase the chance of that happening. I watched my dad do that for years. Stress has huge health consequences and will make disease and pain worse. When the head of a spine surgery department missed my correct diagnosis, and I found the answer myself in medical literature, no other doctor in that health system would talk to him on my behalf, not even doctors who had known me for years. Their advice was to get another opinion and suggested Mayo or Cleveland Clinic. Doctors can be under a huge stress in their jobs, and over scheduled, and I think as patients we need to be mindful of this. We don't always get answers or the answers we wanted. I always want to be the best patient I can be, and to be appreciative of their time and attention. I also know my health starts with the choices I make every day. I hope that helps in some way.

REPLY
@bryan_in_dallas

Thank you for the detailed reply, but it’s all been checked. Like I said I’ve been to approx 20 doctors / specialists in Dallas. I’ve had MRIs and CT scenes of my brain, neck, lungs (incl mid back), lower back, tail bone sacroiliac joints. I’ve had xrays of a lot more, plus a spinal tap.

On a related note, I was very sick and diagnosed with JRA (systemic) in 1975, when I as 13. I’ve even gotten the old medical records fro University of Iowa and added them to my growing 3 inch thick folder of medical history.

On a side note, I’m a civil engineer…Vice President at an engineering firm…I read and research ferociously and I’m geared to analyzing and solving all sorts of problems. I asked tons of questions and, like I said I’m on my 6th rheumatologist (two of which have national credentials as being top in their field) and have seen 5 neurologist, plus pulmonary, vascular, cardio, and even a dermatologist who specializes in connective tissue / autos immune disorders. I’ve seen allergists, pain management doctors and on and on. Still none can determine why I hurt in every muscle of my body, every day, and have massive inflammation.

My Internist is married to a Rheumatologist, who is partners with one of those two nationally recognized rheumatologists that I mentioned. Everyone….EVERYONE…has run out of ideas. So Mayo was my last chance at trying to find a way to feel better. I’m 56 with high school aged kids and I now very painfully walk with a cane and can’t muster the strength or deal with the pain, after a long day of work, to even attend their baseball and volleyball games.

So Mayo thumps their huge chest claiming they take on the toughest of the tough cases…..which I truly lfeel I am. Yet, they took a pass. No interest….can’t help. Short email with do not reply. When I called their internal medicine group the nice young man told me they have more cases than capacity and blah, blah, blah. Sorry to sound bitter, but I am. I will also make it my passion to tell people what a crock of shit they are, when it gets to real difficult cases. This is un acceptable, and completely against EVERYTHING I’ve ever thought of the Mayo Clinic. Fuck ‘em. They’ve TOTALLY AND COMPLETELY LET ME DOWN.

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Hi @bryan_in_dallabryan_in_dallas

I just read your posts. Have you tried Dr. Robert Katz at Rush University Medical Center in Chicago. Illinois? He is rated the top rheumatologist (in the top 1%) in the country. Once u get an appointment with him, just know that when u arrive for your appointment, the waiting room will be full and there may be a wait of an hour or so, but it is well worth it and he is phenomenal! He has his own lab in the office, his own days, and MRI just a floor above. He makes everything convenient for the patients. Like you, he is also a researcher and has written numerous scientific papers. I hope this helps and good luck to you!

REPLY
@bryan_in_dallas

Wow, I just received a similar email. I’ve suffered from constant, chronic pain, from head to toe, for nearly 15 years now. It was manageable for the first several years, but has become very debilitating, over that past 10 years, I’ve been to probably seen 20 different doctors (including 6 rheumatologists and 5 neurologist) in Dallas and had many tests run. No one can diagnose why my inflammation markers are alway 4 to 5x the max for normal or why my muscles, head, eyes, etc, ache all day, every day. Though I know I have osteoarthritis in my spine and hips, that doesn’t explain the total body pain. I’ve also been told I “probably” or “maybe” have Fibromyalgia, but I don’t have the classic hot spots and that still doesn’t explain my inflammation.

My current rheumatologist just calls it an “undiagnosed autoimmune disorder.” I’ve tried all kinds of meds and, and still take several. I also now see a pain management doctor for strong pain meds, but even with that, my daily pain is never, ever, less than a 6.

Throughout this process, I’ve also nearly died from ARDS (with no identified cause) and been thru prostate cancer undergoing brachytherapy to kill my prostate/cancer. My rheumatologist would like to try a biological, but they are not recommended if you’ve had major infections and/or cancer in the past 5 years. Well, I’ve had both.

Along the way, I’ve had more than one doctor suggest going to Mayo, but I was concerned about the cost and available time to go up there. That said, I’ve always thought of Mayo as my last resort. Surely they could get to the bottom of why I feel terrible all the time.

So, with my wife’s encouragement, I finally called to set up an appointment. The young man I talked to in the new appointment department was very friendly and encouraging. Last Friday, we spent over an hour and a half going thru my medical history and new patient questionnaires. He said I’d definitely hear back by the following Friday (tomorrow) with all the details on my appointment.

Concerned that maybe I gave them too much information, I called the internal medical department, back on Monday, to tell them though I provided every medical issue, I’ve ever had in my 56 years, I wanted to make sure they know the only real reason I’m coming to Mayo is to try to diagnose why I feel terrible. The young lady there, was also very nice and assured me they were reviewing my file in detail and would get back with an appointment in a couple days. She also said she’d add notes to my file, from our conversation, and make certain the doctors got that message.

So late yesterday, I received a brief email (with a “do not reply” notice) telling me they’ve rejected my appointment request because they have determined they can’t do anything for me. WTH? I had no idea that was even a possibility. Never even occurred to me. Like I said, Mayo was my last real hope at ever feeling any better, for the rest of my life, and they’ve taken a pass. I’m both shocked, frustrated and considerable sad.

For what it’s worth, I grew up in northeast Iowa…a couple hours from Mayo in Rochester…and always thought they were the best of the best, smartest of the smartest and would help anyone if their medical conditions became too complicated for other doctors to figure out. Boy was I wrong. It bring tears to my eyes just writing this. Thanks Mayo, have a great life. BD

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@bryan_in_dallas

If u need an excellent neurosurgeon for an opinion, I have one of those also. Dr. Neckrysh at University of Illinois in Chicago. This surgeon is truly amazing and skilled beyond belief.

REPLY
@bryan_in_dallas

Actually, I appreciate your reply Colleen. I guess my biggest gripe is Mayo shouldhave told me at the very beginning of my first call that they only accept certain cases and they can not guarantee I would get an appointment. They also should have suggested a doctor referral. I would have approached the entire process differently, had I known that. Now they have all my info and I’ve been denied an appointment. Then when I called their internal medicine group to ask why, all the guy kept saying was that I should “consult with my local provider, they know you better.” As I’ve already stated, I’ve been consulting with local doctors for years and they can’t figure it out. That’s why I finally called Mayo. So where do you go when the great and powerful Mayo says no? I guess you just resolve yourself to the fact you will feel terrible, the REST OF YOUR LIFE. That sucks.

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@bryan_in_dallas Definitely a tough spot to be in. I, too, read your posts. With your background of research and history, would you consider moving your focus to another medical facility? Not everyone here on Mayo Clinic Connect is a Mayo patient. Not knowing where may be your best fit, the ones that come to my mind are Baylor University Hospital, University of California San Francisco, Keck University of Southern California. It may be worth looking in to. Please know we do not take your situation lightly, and want the best for you.
Ginger

REPLY

@bryon-in-Dallas According to your handle I take it you live in Dallas . There are good university hospitals in the Dallas area plus Houston I too am sorry for the reaction you had at Mayo . I'm from Pa. and we had Cleveland Clinic, John Hopkins so like ginger said reach out to those university hospital.

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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

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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@bryon-in-dallas Good luck to you

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Thank you ma’am.

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