Seeking Second Opinion for Thoracic Myelopathy at Mayo Rochester

Posted by upnort @upnort, Jul 1 10:41am

After a year and a half of testing, including two Spinal Angiographs, my Mayo neurologists cannot pinpoint the origins of my thoracic myelopathy. He would be agreeable for me seeking a second opinion. I live in northern Wisconsin, and have been to the Marshfield Clinic and UW-Madison neurology departments for diagnosis/treatment. Both institutions referred me to the Mayo Clinic, neurology department, as they are recognized as one of the nation’s top neurology departments. Where does one go to seek a second opinion if the Mayo Clinic does not have an answer (“the place to go to find answers”)?

@wisco50 So glad they got the sack. By the didn't mean to lead you to believe I'm a L.P.N. have plenty of experience was in the 10th of my class and on state boards worked in all areas of the hosp.,nursing home, home health helping my friend the RN start a home health agency and on call for her private duty . I worked in the O.R. as scrub nurse . My spotlight is on Mayo here . That's why I know so much more then one who just stays in one area . I also was charge nurse in several places. I'm in Calif now but did all this in Pa and the L.P.N. can do more there I understand then here . I'm glad you got to go on vacation in between . Good future ahead now if we can get rid of this virus we will be o.k.

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@lioness

@wisco50 So glad they got the sack. By the didn't mean to lead you to believe I'm a L.P.N. have plenty of experience was in the 10th of my class and on state boards worked in all areas of the hosp.,nursing home, home health helping my friend the RN start a home health agency and on call for her private duty . I worked in the O.R. as scrub nurse . My spotlight is on Mayo here . That's why I know so much more then one who just stays in one area . I also was charge nurse in several places. I'm in Calif now but did all this in Pa and the L.P.N. can do more there I understand then here . I'm glad you got to go on vacation in between . Good future ahead now if we can get rid of this virus we will be o.k.

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No issues. Have worked with some excellent LPN’s and CNAs and sometimes encouraged them to go back to school and get paid more for their competence! So much of being good at any job is using common sense and I have worked with folks with advanced degrees who have no common sense! A mystery to me!

Liked by lioness

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@upnort Have you consulted with the Regenerative Medicine researchers at Mayo? If I am understanding correctly, there is a white area that shows damage within your spinal cord itself on the MRI imaging of unknown cause and they have not definitively linked that to your symptoms?
https://www.mayo.edu/research/centers-programs/center-regenerative-medicine/focus-areas/neuroregeneration
https://www.mayo.edu/research/documents/neuroregenerative-medicine-booklet/doc-20092381

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Hello, @upnort. I just got back from northern Wisconsin and it’s so beautiful in your area!

I read your post and wanted to see if I could offer any information that would help you. I see that this a good discussion, but I wanted to touch on your question about second opinions within the same department at Mayo Clinic. I actually have a friend that recently went through a health issue and needed a second opinion at Mayo Clinic within the same area, just as you described. She connected with Mayo Clinic’s Office of Patient Experience at 507-284-4988 (https://www.mayoclinic.org/about-mayo-clinic/patient-experience). They were able to help facilitate a new doctor that she moved forward with.

The Office of Patient Experience addresses concerns about your care experience at Mayo Clinic. You can call them or fill out the form on their page (link above). A Patient Experience Staff will contact you within 3 business days.

I hope this information helps. If you care to share, how long have you been experiencing thoracic myelopathy?

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@jenniferhunter

@upnort Have you consulted with the Regenerative Medicine researchers at Mayo? If I am understanding correctly, there is a white area that shows damage within your spinal cord itself on the MRI imaging of unknown cause and they have not definitively linked that to your symptoms?
https://www.mayo.edu/research/centers-programs/center-regenerative-medicine/focus-areas/neuroregeneration
https://www.mayo.edu/research/documents/neuroregenerative-medicine-booklet/doc-20092381

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Thanks for the tip re: Regenerative Medicine. And "yes" to your question relating cause & effect.

Liked by Jennifer Hunter

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@kellyhahn1

Hello, @upnort. I just got back from northern Wisconsin and it’s so beautiful in your area!

I read your post and wanted to see if I could offer any information that would help you. I see that this a good discussion, but I wanted to touch on your question about second opinions within the same department at Mayo Clinic. I actually have a friend that recently went through a health issue and needed a second opinion at Mayo Clinic within the same area, just as you described. She connected with Mayo Clinic’s Office of Patient Experience at 507-284-4988 (https://www.mayoclinic.org/about-mayo-clinic/patient-experience). They were able to help facilitate a new doctor that she moved forward with.

The Office of Patient Experience addresses concerns about your care experience at Mayo Clinic. You can call them or fill out the form on their page (link above). A Patient Experience Staff will contact you within 3 business days.

I hope this information helps. If you care to share, how long have you been experiencing thoracic myelopathy?

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Thank you for the info about the Office of Patient Experiences. I will follow up. To answer your question, it is going on three years experiencing thoracic myelopathy.

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@upnort

After 19 months with the same neurologist at Rochester’s Mayo Clinic, I was not seeing any improvement with my myelopathy. My symptoms, as I reported in earlier posts here…numbness from waist on down, onset of ED, balance issues, sporadic muscle twitches in both legs, uneven gait,tired heavy legs, along with bladder/bowel issues…have progressively become more pronounced and have obviously changed my once active lifestyle( I was an avid runner for 55 of my 70 years – I now struggle to walk for 30 minutes for daily exercise and stairs and steps have become my nemisis.) Numerous tests( over a dozen scans and MRI’s MRA’s, spinal taps, and blood draws, and two spinal artery angiograms, also reported in earlier posts here, have yielded no results as to the cause of a spinal lesion – biopsy of lesion was ruled out from the get-go as it is in the spine). Cases in which a cause cannot be identified are called idiopathic. Mayo’s own website cites that if MRI’s, blood tests, and lumbar punctures do not suggest a specific cause, the person is presumed to have idiopathic transverse myelitis. Many of these symptoms also mimic other neurological diseases. I have asked for “another set of eyes” (read “second opinion”) on my case within the neurology department of the Rochester Mayo Clinic in the hope of shedding a new perspective and developing a new health care plan. As pointed out by one of you in one of the July posts here: “I wanted to touch on your question about second opinions within the same department at Mayo Clinic…a friend recently needed a second opinion at Mayo Clinic within the same area. She connected with Mayo Clinic’s Office of Patient Experience. They were able to help facilitate a new doctor that she moved forward with.” I did exactly that – I contacted the Office of Patient Experience. In summary, I was told that my case had been studied fully by a” highly selected team of many experts in neurolgy and in other relevant departments” at Mayo. For this reason, there would be no advantage for another neurologist at Mayo to meet with me. This response was devastating, disappointing, and humilating. No patient should have to feel bad about seeking a second opinion about his life-altering health condition. Mayo Clinic should be better than that: “The need of the patient comes first.” – Mayo Clinic

Mayo is ranked #1 in neurology. Where does one go after #1 turns you down for “another set of eyes” to look at my case? I have been a cooperative patient for 19 months and have consented to take all tests presented to me in that time period. But time is of the essence. I am already afraid any nerve damage I am experiencing will be permanent, with further damage as time passes. Getting the correct treatment early is important, with treatment focusing on minimizing effects of the disease, modifying the course of the disease, and managing the symptoms of the disease.

I have begun the application process to UDN (Undiagnosed Diseases Network), but the process is time-consuming(acceptance takes 2-4 months) and the chances of being accepting into the program are slim (to date: 4,634 appilcations received, 371 appications under review, 1, 740 participants accepted, 1, 413 evaluated, 427 diagnosed). In the meantime, I feel abandoned by Mayo Clinic, specifically the neurology department, left alone with no current care plan or course of treatment for my worsening symptoms.
Should I contact Patient Experiences and ask them to reconsider? Should I seek out a patient advocate to help me seek an answer? Should I continue with my UDN appication and wait it out until November or December? Should I just suck it up and live with my disease as best as I can? Your thoughts, comments, suggestions, advice are always welcome.
Stay happy and healthy and safe.
upnort@upnort

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@upnort I really feel for you and wish I could help. I had good luck with the neurology dept., but mine was for headaches. I hope you get into that (Undiagnosed Disease Network.) I know what pain is like and had to wait a year before my fusion surgery, part of it was I was deciding whether to have it or not. I wish you the best and hope you get help soon

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After 19 months with the same neurologist at Rochester’s Mayo Clinic, I was not seeing any improvement with my myelopathy. My symptoms, as I reported in earlier posts here…numbness from waist on down, onset of ED, balance issues, sporadic muscle twitches in both legs, uneven gait,tired heavy legs, along with bladder/bowel issues…have progressively become more pronounced and have obviously changed my once active lifestyle( I was an avid runner for 55 of my 70 years – I now struggle to walk for 30 minutes for daily exercise and stairs and steps have become my nemisis.) Numerous tests( over a dozen scans and MRI’s MRA’s, spinal taps, and blood draws, and two spinal artery angiograms, also reported in earlier posts here, have yielded no results as to the cause of a spinal lesion – biopsy of lesion was ruled out from the get-go as it is in the spine). Cases in which a cause cannot be identified are called idiopathic. Mayo’s own website cites that if MRI’s, blood tests, and lumbar punctures do not suggest a specific cause, the person is presumed to have idiopathic transverse myelitis. Many of these symptoms also mimic other neurological diseases. I have asked for “another set of eyes” (read “second opinion”) on my case within the neurology department of the Rochester Mayo Clinic in the hope of shedding a new perspective and developing a new health care plan. As pointed out by one of you in one of the July posts here: “I wanted to touch on your question about second opinions within the same department at Mayo Clinic…a friend recently needed a second opinion at Mayo Clinic within the same area. She connected with Mayo Clinic’s Office of Patient Experience. They were able to help facilitate a new doctor that she moved forward with.” I did exactly that – I contacted the Office of Patient Experience. In summary, I was told that my case had been studied fully by a” highly selected team of many experts in neurolgy and in other relevant departments” at Mayo. For this reason, there would be no advantage for another neurologist at Mayo to meet with me. This response was devastating, disappointing, and humilating. No patient should have to feel bad about seeking a second opinion about his life-altering health condition. Mayo Clinic should be better than that: “The need of the patient comes first.” – Mayo Clinic

Mayo is ranked #1 in neurology. Where does one go after #1 turns you down for “another set of eyes” to look at my case? I have been a cooperative patient for 19 months and have consented to take all tests presented to me in that time period. But time is of the essence. I am already afraid any nerve damage I am experiencing will be permanent, with further damage as time passes. Getting the correct treatment early is important, with treatment focusing on minimizing effects of the disease, modifying the course of the disease, and managing the symptoms of the disease.

I have begun the application process to UDN (Undiagnosed Diseases Network), but the process is time-consuming(acceptance takes 2-4 months) and the chances of being accepting into the program are slim (to date: 4,634 appilcations received, 371 appications under review, 1, 740 participants accepted, 1, 413 evaluated, 427 diagnosed). In the meantime, I feel abandoned by Mayo Clinic, specifically the neurology department, left alone with no current care plan or course of treatment for my worsening symptoms.
Should I contact Patient Experiences and ask them to reconsider? Should I seek out a patient advocate to help me seek an answer? Should I continue with my UDN appication and wait it out until November or December? Should I just suck it up and live with my disease as best as I can? Your thoughts, comments, suggestions, advice are always welcome.
Stay happy and healthy and safe.
upnort@upnort

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@upnort

After 19 months with the same neurologist at Rochester’s Mayo Clinic, I was not seeing any improvement with my myelopathy. My symptoms, as I reported in earlier posts here…numbness from waist on down, onset of ED, balance issues, sporadic muscle twitches in both legs, uneven gait,tired heavy legs, along with bladder/bowel issues…have progressively become more pronounced and have obviously changed my once active lifestyle( I was an avid runner for 55 of my 70 years – I now struggle to walk for 30 minutes for daily exercise and stairs and steps have become my nemisis.) Numerous tests( over a dozen scans and MRI’s MRA’s, spinal taps, and blood draws, and two spinal artery angiograms, also reported in earlier posts here, have yielded no results as to the cause of a spinal lesion – biopsy of lesion was ruled out from the get-go as it is in the spine). Cases in which a cause cannot be identified are called idiopathic. Mayo’s own website cites that if MRI’s, blood tests, and lumbar punctures do not suggest a specific cause, the person is presumed to have idiopathic transverse myelitis. Many of these symptoms also mimic other neurological diseases. I have asked for “another set of eyes” (read “second opinion”) on my case within the neurology department of the Rochester Mayo Clinic in the hope of shedding a new perspective and developing a new health care plan. As pointed out by one of you in one of the July posts here: “I wanted to touch on your question about second opinions within the same department at Mayo Clinic…a friend recently needed a second opinion at Mayo Clinic within the same area. She connected with Mayo Clinic’s Office of Patient Experience. They were able to help facilitate a new doctor that she moved forward with.” I did exactly that – I contacted the Office of Patient Experience. In summary, I was told that my case had been studied fully by a” highly selected team of many experts in neurolgy and in other relevant departments” at Mayo. For this reason, there would be no advantage for another neurologist at Mayo to meet with me. This response was devastating, disappointing, and humilating. No patient should have to feel bad about seeking a second opinion about his life-altering health condition. Mayo Clinic should be better than that: “The need of the patient comes first.” – Mayo Clinic

Mayo is ranked #1 in neurology. Where does one go after #1 turns you down for “another set of eyes” to look at my case? I have been a cooperative patient for 19 months and have consented to take all tests presented to me in that time period. But time is of the essence. I am already afraid any nerve damage I am experiencing will be permanent, with further damage as time passes. Getting the correct treatment early is important, with treatment focusing on minimizing effects of the disease, modifying the course of the disease, and managing the symptoms of the disease.

I have begun the application process to UDN (Undiagnosed Diseases Network), but the process is time-consuming(acceptance takes 2-4 months) and the chances of being accepting into the program are slim (to date: 4,634 appilcations received, 371 appications under review, 1, 740 participants accepted, 1, 413 evaluated, 427 diagnosed). In the meantime, I feel abandoned by Mayo Clinic, specifically the neurology department, left alone with no current care plan or course of treatment for my worsening symptoms.
Should I contact Patient Experiences and ask them to reconsider? Should I seek out a patient advocate to help me seek an answer? Should I continue with my UDN appication and wait it out until November or December? Should I just suck it up and live with my disease as best as I can? Your thoughts, comments, suggestions, advice are always welcome.
Stay happy and healthy and safe.
upnort@upnort

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Hi @upnort, you'll notice that I moved your latest message to the discussion you started earlier in July to keep your journey and its evolution in one story line to help members get the history and where you're at now.

I can understand that you feel devastated and disappointed that a request to see a different neurologist at Mayo Clinic was denied. I agreed with the members who encouraged you to make the query. I'm truly sorry that you were made to feel humiliated during this process. You had every reason to make the request. At the same time, I know that the response you received – that your case was reviewed and discussed by a highly selected team of experts in neurology and other relevant departments at Mayo – to be true. Indeed this is the advantage of Mayo Clinic. While you may be seen physically by one person, that expert consults with a team of experts and your diagnosis and treatment plans are a result of multi-disciplinary expertise.

I would encourage you to continue to advocate for your care. Continue with the UDN application and continue working with your neurologist at Mayo Clinic. Ask him/her who has been consulted. You can always contact the Office of Patient Experience, share your experience of feeling humiliated and ask for their advice on how to proceed so that you feel confident with the multidisciplinary care you are getting and how to move forward.

Upnort, there's one part of your story I don't understand. What treatment options have been suggested? Why are you left without a care plan?

Liked by wisco50

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I think Colleen (moderator), above, has a response I would agree with, having been both an RN and a patient (not Mayo) myself. I would be incredibly disappointed, frustrated, discouraged. I personally don’t believe I would feel humiliated – you did nothing wrong, nothing out of the ordinary. I’d be depressed. But when I think of the word humiliation – for me – I/you did nothing to be humiliated about. From my nursing perspective this almost sounds like what we would have called a departmental meeting/case review. I actually had it happen to me about my cervical spine problems. Years after my initial 2 level fusion I was told several things about my “newer” neck pain symptoms/problems. One opinion in conflict with my previous understanding. So my case was discussed at neurosurgical departmental meeting. Group consensus was “best option is XXXXXX”. I chose to ignore the suggestion for more surgery. Got one outside opinion from a different facility. Have continued to opt out of surgery. I realize your situation is much more scary, Upnort, because your symptoms are not stable/not improving. It is very possible that even Mayo cannot figure out a definitive diagnosis. They have an amazing reputation but sometimes a patient will defy all odds of diagnosis. I hope you somehow find a breakthrough answer. Not sure what else to do or say. But please try not to feel humiliated, you will just be beating yourself up for nothing! 😢 Hugs and peace.

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Thanks to both of you for your honest feedback. It's always reassuring to know there are other patiients out there with similar stories to tell. To your point of what care plan I was initially on: IV prednisone(8 weeks), oral prednisone (60 mg tabs for 4 months, gabapentin (4 weeks), physical therapy, myofacial release, (2 sessions), water aerobics/ yoga/ CBD oil/cream (6 weeks). The medicines gave me terrible side effects, and although I continue with the daily physical exercise, I have had no relief in my symptoms. I have not been on any medication since March 1. and currently have no specific care plan. My neuroligist said he has not seen a case with my exact symptoms in his years at Mayo Clinic – not exactly a confidence builder!.
Thanks again for taking the time to give me your input. I will both connect wtih the Office of Patient Experience and complete my UDN application.
Sincere regards.

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@upnort

Thanks to both of you for your honest feedback. It's always reassuring to know there are other patiients out there with similar stories to tell. To your point of what care plan I was initially on: IV prednisone(8 weeks), oral prednisone (60 mg tabs for 4 months, gabapentin (4 weeks), physical therapy, myofacial release, (2 sessions), water aerobics/ yoga/ CBD oil/cream (6 weeks). The medicines gave me terrible side effects, and although I continue with the daily physical exercise, I have had no relief in my symptoms. I have not been on any medication since March 1. and currently have no specific care plan. My neuroligist said he has not seen a case with my exact symptoms in his years at Mayo Clinic – not exactly a confidence builder!.
Thanks again for taking the time to give me your input. I will both connect wtih the Office of Patient Experience and complete my UDN application.
Sincere regards.

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@upnort, you said "My neuroligist said he has not seen a case with my exact symptoms in his years at Mayo Clinic – not exactly a confidence builder!"

This is precisely the type of comment that allows me to say with confidence that your neurologist consulted his colleagues. Mayo Clinic physicians are not afraid to admit when they don't know something because they know they are supported by others at the hospital and can draw on the experience and expertise of multiple colleagues. I don't want to belabor the point, but say this to reassure you that your neurologist is not working alone.

At the same time, it's important that he give you the confidence that you need. Be honest and milk the team approach. With the advantage of hindsight, you can certainly say something "Well Doc, that's not a great confidence booster. How can we work together to get some of my quality of life back? Who else have you consulted about my case? What else can be done? What can I do?"

Liked by migizii, wisco50

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@upnort

After 19 months with the same neurologist at Rochester’s Mayo Clinic, I was not seeing any improvement with my myelopathy. My symptoms, as I reported in earlier posts here…numbness from waist on down, onset of ED, balance issues, sporadic muscle twitches in both legs, uneven gait,tired heavy legs, along with bladder/bowel issues…have progressively become more pronounced and have obviously changed my once active lifestyle( I was an avid runner for 55 of my 70 years – I now struggle to walk for 30 minutes for daily exercise and stairs and steps have become my nemisis.) Numerous tests( over a dozen scans and MRI’s MRA’s, spinal taps, and blood draws, and two spinal artery angiograms, also reported in earlier posts here, have yielded no results as to the cause of a spinal lesion – biopsy of lesion was ruled out from the get-go as it is in the spine). Cases in which a cause cannot be identified are called idiopathic. Mayo’s own website cites that if MRI’s, blood tests, and lumbar punctures do not suggest a specific cause, the person is presumed to have idiopathic transverse myelitis. Many of these symptoms also mimic other neurological diseases. I have asked for “another set of eyes” (read “second opinion”) on my case within the neurology department of the Rochester Mayo Clinic in the hope of shedding a new perspective and developing a new health care plan. As pointed out by one of you in one of the July posts here: “I wanted to touch on your question about second opinions within the same department at Mayo Clinic…a friend recently needed a second opinion at Mayo Clinic within the same area. She connected with Mayo Clinic’s Office of Patient Experience. They were able to help facilitate a new doctor that she moved forward with.” I did exactly that – I contacted the Office of Patient Experience. In summary, I was told that my case had been studied fully by a” highly selected team of many experts in neurolgy and in other relevant departments” at Mayo. For this reason, there would be no advantage for another neurologist at Mayo to meet with me. This response was devastating, disappointing, and humilating. No patient should have to feel bad about seeking a second opinion about his life-altering health condition. Mayo Clinic should be better than that: “The need of the patient comes first.” – Mayo Clinic

Mayo is ranked #1 in neurology. Where does one go after #1 turns you down for “another set of eyes” to look at my case? I have been a cooperative patient for 19 months and have consented to take all tests presented to me in that time period. But time is of the essence. I am already afraid any nerve damage I am experiencing will be permanent, with further damage as time passes. Getting the correct treatment early is important, with treatment focusing on minimizing effects of the disease, modifying the course of the disease, and managing the symptoms of the disease.

I have begun the application process to UDN (Undiagnosed Diseases Network), but the process is time-consuming(acceptance takes 2-4 months) and the chances of being accepting into the program are slim (to date: 4,634 appilcations received, 371 appications under review, 1, 740 participants accepted, 1, 413 evaluated, 427 diagnosed). In the meantime, I feel abandoned by Mayo Clinic, specifically the neurology department, left alone with no current care plan or course of treatment for my worsening symptoms.
Should I contact Patient Experiences and ask them to reconsider? Should I seek out a patient advocate to help me seek an answer? Should I continue with my UDN appication and wait it out until November or December? Should I just suck it up and live with my disease as best as I can? Your thoughts, comments, suggestions, advice are always welcome.
Stay happy and healthy and safe.
upnort@upnort

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@migizii which Mayo have you been going to? Many years ago, I went to Rochester Mayo neurology for chronic migraines-hoping for help, support and treatment. I did not receive this, but instead a brief consult (of all the materials I had brought). The doctor was arrogant, but knowledgable. I left devastated and returned to my local clinic with no help. The doctor I saw is still there. As I was thinking of trying again, but I made a formal complaint, I’m pretty sure I would not get accepted again as I would definitely want to see a different doctor in the department. I have found relief over the years, but regard Mayo like you do, as the best…..

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@colleenyoung

@upnort, you said "My neuroligist said he has not seen a case with my exact symptoms in his years at Mayo Clinic – not exactly a confidence builder!"

This is precisely the type of comment that allows me to say with confidence that your neurologist consulted his colleagues. Mayo Clinic physicians are not afraid to admit when they don't know something because they know they are supported by others at the hospital and can draw on the experience and expertise of multiple colleagues. I don't want to belabor the point, but say this to reassure you that your neurologist is not working alone.

At the same time, it's important that he give you the confidence that you need. Be honest and milk the team approach. With the advantage of hindsight, you can certainly say something "Well Doc, that's not a great confidence booster. How can we work together to get some of my quality of life back? Who else have you consulted about my case? What else can be done? What can I do?"

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I think your advice here is both logical and practical. I will try this approach in the days ahead. Thank you very much!

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@migizii

@migizii which Mayo have you been going to? Many years ago, I went to Rochester Mayo neurology for chronic migraines-hoping for help, support and treatment. I did not receive this, but instead a brief consult (of all the materials I had brought). The doctor was arrogant, but knowledgable. I left devastated and returned to my local clinic with no help. The doctor I saw is still there. As I was thinking of trying again, but I made a formal complaint, I’m pretty sure I would not get accepted again as I would definitely want to see a different doctor in the department. I have found relief over the years, but regard Mayo like you do, as the best…..

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Mayo Clinic in Rochester. I am hoping to stay with this clinic as I feel I have spent too much time here (19 months) and too many visits( a 5 hour drive from my northern Wisconsin home) to seek help elsewhere. As I have mentioned, it is hard to justify leaving the #1 neurology department in the country. Where does one go after #1 gives you no answers? I will continue to pursue my relationship with my current neurologist as I continue my application to the UDN. Thanks for your input.

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