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

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.

REPLY

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!

REPLY
@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!

Jump to this post

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!

REPLY
@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!

Jump to this post

@keithwalker This is an excellent response and you are a wonderful dad! The National Institute of Health is also a great resource for medical literature that helped me by explaining my symptoms for a spine problem that my doctors were missing. That is how I came to Mayo after surgical intervention was refused to me by several local surgeons. I am so glad that you advocated for your daughter and you can share how you did this. I was wondering if there was any possibility of some kind of toxicity or exposure to something that is triggering autoimmunity, and if that was something that was considered? For example, it could be environmental chemicals or something like a reaction to dental restoration materials if that applies to her situation.

I have an autoimmune thyroid condition that my environmental medicine doctor believes was caused by exposure to mercury from old dental amalgam filings that had been in my mouth for 40+ years that were previously presumed to be safe. It was only after they were removed that my blood work could detect the antibody levels against my thyroid and they were much lower; prior to this, the levels were off the charts and could not be read. The doctor who pioneered the field of environmental medicine started the Environmental Health Center in Dallas and published some detailed volumes for doctors that can be purchased about the biochemistry of how the body functions and detoxes as well as how electromagnetic fields affect this. They see patients with chemical sensitivities. I also see a biological dentist who uses safer materials and because I also have old root canals that are causing problems, I am discussing this with my dentist. The material used to plug a tooth in a root canal contains cadmium, a heavy metal and over time that can leak from the tooth with the bacterial infection and this is the dilemma that I'm facing now because of trauma to my teeth when I was a kid. Mainstream medicine and dentistry may not be looking at environmental factors, but it is possible to have a reaction to something foreign that is stored in body tissues and triggers an autoimmune attack.

You may also be interested in a book from an author who recovered from an autoimmune problem. Here are links both.
Environmental Health Center Dallas https://www.ehcd.com/
The Autoimmune Epidemic https://donnajacksonnakazawa.com/autoimmune-epidemic/

My dentist discussed the work of Dietrich Klinghardt M.D., Ph.D with me because of a new metal free dental implant that he helped develop and I found this on the website. It explains some issues of detoxing from metals and how metals interfere. I found it interesting, but anyone engaging in a metal detox regimen should do this under a doctor's supervision because the patient is exposed to the toxins again when they are pulled out of the tissues unless there is a pathway to elimination from the body.
https://klinghardtinstitute.com/wp-content/uploads/2016/01/Explore-Neurotoxin-protocol.pdf
Keep searching and thinking outside the box. You might find the cause.

Jennifer

REPLY
@jenniferhunter

@keithwalker This is an excellent response and you are a wonderful dad! The National Institute of Health is also a great resource for medical literature that helped me by explaining my symptoms for a spine problem that my doctors were missing. That is how I came to Mayo after surgical intervention was refused to me by several local surgeons. I am so glad that you advocated for your daughter and you can share how you did this. I was wondering if there was any possibility of some kind of toxicity or exposure to something that is triggering autoimmunity, and if that was something that was considered? For example, it could be environmental chemicals or something like a reaction to dental restoration materials if that applies to her situation.

I have an autoimmune thyroid condition that my environmental medicine doctor believes was caused by exposure to mercury from old dental amalgam filings that had been in my mouth for 40+ years that were previously presumed to be safe. It was only after they were removed that my blood work could detect the antibody levels against my thyroid and they were much lower; prior to this, the levels were off the charts and could not be read. The doctor who pioneered the field of environmental medicine started the Environmental Health Center in Dallas and published some detailed volumes for doctors that can be purchased about the biochemistry of how the body functions and detoxes as well as how electromagnetic fields affect this. They see patients with chemical sensitivities. I also see a biological dentist who uses safer materials and because I also have old root canals that are causing problems, I am discussing this with my dentist. The material used to plug a tooth in a root canal contains cadmium, a heavy metal and over time that can leak from the tooth with the bacterial infection and this is the dilemma that I'm facing now because of trauma to my teeth when I was a kid. Mainstream medicine and dentistry may not be looking at environmental factors, but it is possible to have a reaction to something foreign that is stored in body tissues and triggers an autoimmune attack.

You may also be interested in a book from an author who recovered from an autoimmune problem. Here are links both.
Environmental Health Center Dallas https://www.ehcd.com/
The Autoimmune Epidemic https://donnajacksonnakazawa.com/autoimmune-epidemic/

My dentist discussed the work of Dietrich Klinghardt M.D., Ph.D with me because of a new metal free dental implant that he helped develop and I found this on the website. It explains some issues of detoxing from metals and how metals interfere. I found it interesting, but anyone engaging in a metal detox regimen should do this under a doctor's supervision because the patient is exposed to the toxins again when they are pulled out of the tissues unless there is a pathway to elimination from the body.
https://klinghardtinstitute.com/wp-content/uploads/2016/01/Explore-Neurotoxin-protocol.pdf
Keep searching and thinking outside the box. You might find the cause.

Jennifer

Jump to this post

Yes, environmental factors are an important consideration when trying to discover the root cause of autoimmunity. Our bodies possess a toxic load capacity and once it exceeds that limit, both physical and mental issues can ensue. Another thing to consider is trauma, both physical and emotional trauma—surgeries, loss of loved ones especially caretakers, car accidents, divorce including parental divorces. One of the leading experts on trauma Bessel van der Kolk, MD has an excellent book on this, The Body Keeps Score.

We don’t just become ill and our genes don’t make us sick. Rather, certain generic expressions are triggered by our environmental exposure, physical and emotional.

REPLY
@jenniferhunter

@keithwalker This is an excellent response and you are a wonderful dad! The National Institute of Health is also a great resource for medical literature that helped me by explaining my symptoms for a spine problem that my doctors were missing. That is how I came to Mayo after surgical intervention was refused to me by several local surgeons. I am so glad that you advocated for your daughter and you can share how you did this. I was wondering if there was any possibility of some kind of toxicity or exposure to something that is triggering autoimmunity, and if that was something that was considered? For example, it could be environmental chemicals or something like a reaction to dental restoration materials if that applies to her situation.

I have an autoimmune thyroid condition that my environmental medicine doctor believes was caused by exposure to mercury from old dental amalgam filings that had been in my mouth for 40+ years that were previously presumed to be safe. It was only after they were removed that my blood work could detect the antibody levels against my thyroid and they were much lower; prior to this, the levels were off the charts and could not be read. The doctor who pioneered the field of environmental medicine started the Environmental Health Center in Dallas and published some detailed volumes for doctors that can be purchased about the biochemistry of how the body functions and detoxes as well as how electromagnetic fields affect this. They see patients with chemical sensitivities. I also see a biological dentist who uses safer materials and because I also have old root canals that are causing problems, I am discussing this with my dentist. The material used to plug a tooth in a root canal contains cadmium, a heavy metal and over time that can leak from the tooth with the bacterial infection and this is the dilemma that I'm facing now because of trauma to my teeth when I was a kid. Mainstream medicine and dentistry may not be looking at environmental factors, but it is possible to have a reaction to something foreign that is stored in body tissues and triggers an autoimmune attack.

You may also be interested in a book from an author who recovered from an autoimmune problem. Here are links both.
Environmental Health Center Dallas https://www.ehcd.com/
The Autoimmune Epidemic https://donnajacksonnakazawa.com/autoimmune-epidemic/

My dentist discussed the work of Dietrich Klinghardt M.D., Ph.D with me because of a new metal free dental implant that he helped develop and I found this on the website. It explains some issues of detoxing from metals and how metals interfere. I found it interesting, but anyone engaging in a metal detox regimen should do this under a doctor's supervision because the patient is exposed to the toxins again when they are pulled out of the tissues unless there is a pathway to elimination from the body.
https://klinghardtinstitute.com/wp-content/uploads/2016/01/Explore-Neurotoxin-protocol.pdf
Keep searching and thinking outside the box. You might find the cause.

Jennifer

Jump to this post

Thank you for the response and the insightful information. Godspeed to you and have a wonderful Thanksgiving! Despite all of our adversity, we do have a lot to be thankful for.

REPLY
@keithwalker

Thank you for the response and the insightful information. Godspeed to you and have a wonderful Thanksgiving! Despite all of our adversity, we do have a lot to be thankful for.

Jump to this post

Keith, you are correct…there is much for which to be grateful. Blessings to you and your family; may you have a beautiful Thanksgiving and holiday.

REPLY
@keithwalker

Thank you for the response and the insightful information. Godspeed to you and have a wonderful Thanksgiving! Despite all of our adversity, we do have a lot to be thankful for.

Jump to this post

@keithwalker You are most welcome. Adversity is tough, but it teaches us how to be better, and I am thankful for it. It made me who I am today, and I'm able to be here to share what I have learned. I wish you and your daughter continuing insight to find solutions. God bless!

REPLY

wow, never heard of a denial. It is the insurance?

REPLY

Nope. I’ve learned it’s quite common.

REPLY

mayo clinic has changed a lot since 2010 and treatment for illness have changed. I have fibromyalgia and had a stroke. I am dealing with a kidney stone now with a super fibromyalgia flare up. My local doctors canceled kidney stone surgery because of my short of breath, heart palpation, and stroke history. The fibromyalgia support is you will always have flare ups. Returned to mayo but my general Internal doctor is in another dept and I was assigned a N.P. We don't get along and I have asked to change but was told have to wait one year. WHY? I was taught not everyone gets along and can talk to everyone. So WHY do I need to wait one year for stone to get bigger, more stress, more pain, and more diculities with surgery later. How do I get better help now?

REPLY
@leslon

mayo clinic has changed a lot since 2010 and treatment for illness have changed. I have fibromyalgia and had a stroke. I am dealing with a kidney stone now with a super fibromyalgia flare up. My local doctors canceled kidney stone surgery because of my short of breath, heart palpation, and stroke history. The fibromyalgia support is you will always have flare ups. Returned to mayo but my general Internal doctor is in another dept and I was assigned a N.P. We don't get along and I have asked to change but was told have to wait one year. WHY? I was taught not everyone gets along and can talk to everyone. So WHY do I need to wait one year for stone to get bigger, more stress, more pain, and more diculities with surgery later. How do I get better help now?

Jump to this post

I joined this group to see if the mayo clinic could help me, by what I'm seeing the answers is probably not. On my own reserch I've ran across alot of information, when I see kidney stones fibromyalgia and your other symptoms I think high oxalate, not sure if this will help but look up Susan Owens trying low oxalate diet online plus she's got a ton of information in her files on this I do believe she use to be a resercher for NIH.

REPLY
@fmgeorge

Keith, you are correct…there is much for which to be grateful. Blessings to you and your family; may you have a beautiful Thanksgiving and holiday.

Jump to this post

Thank You. Godspeed,

REPLY
@leslon

mayo clinic has changed a lot since 2010 and treatment for illness have changed. I have fibromyalgia and had a stroke. I am dealing with a kidney stone now with a super fibromyalgia flare up. My local doctors canceled kidney stone surgery because of my short of breath, heart palpation, and stroke history. The fibromyalgia support is you will always have flare ups. Returned to mayo but my general Internal doctor is in another dept and I was assigned a N.P. We don't get along and I have asked to change but was told have to wait one year. WHY? I was taught not everyone gets along and can talk to everyone. So WHY do I need to wait one year for stone to get bigger, more stress, more pain, and more diculities with surgery later. How do I get better help now?

Jump to this post

@leslon, you might consider contacting the Office of Patient Experience to share about your experience with the NP. Here is more information: https://www.mayoclinic.org/about-mayo-clinic/patient-experience

REPLY
@colleenyoung

@leslon, you might consider contacting the Office of Patient Experience to share about your experience with the NP. Here is more information: https://www.mayoclinic.org/about-mayo-clinic/patient-experience

Jump to this post

Thank you. I have been to that office and that is where I was told have to have who I was given (NP) for one year. This can go on and on.

REPLY
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