Anyone go to a Mayo Clinic for neuropathy?

Posted by wisfloj @wisfloj, May 30, 2019

I’m just wondering if anybody has gone to a MAYO clinic for assessment, evaluation, a specific diagnosis and hopefully treatment? It has been in the back of my mind as my next and final step since it is feasible to drive to the Jacksonville location as I am in Tampa, Florida. (PN in feet, legs, hands and arms)

Interested in more discussions like this? Go to the Neuropathy Support Group.

@felicelinda

Hi rwinney,
Did the Mayo Clinic after they did the tests help to reduce your neuropathy pain? If so, what did they do? TIA

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That’s what I want to know-what did Mayo do to reduce ur pain?

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@njed

@rwinney Hi Rachel - Like you, I had lots of testing done for 3 years at 3 teaching hospitals and had all of the written reports. Idiopathic, all three. I decided to apply at Mayo Rochester. I sent all reports to Mayo with a letter implying that perhaps I could be a challenge for their doctors. I tried to give them a solid reason to accept me. Was accepted in Nov 2019, went to Mayo Feb 2020 prior to pandemic and I am sure back then the staffing was greater prior to the pandemic. Mayo said idiopathic as well however, they did some tests that the other hospitals did not do. If turned down, I would apply again after 9 - 12 months and provide any changes in condition from the prior application. Nothing to lose and don't get discouraged.

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You said that you went to Mayo, what were the results. I have lower back problems for quite some time. They come & go. But 5 years ago I was diagnosed with peripheral neuropathy. In addition I developed drop foot which has worsened. I have no pain problems, just balance & numbness.

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@bob1946 - My symptoms match yours - numbness, no pain, poor balance, I have bi-lateral drop foot and must wear ankle foot orthotics, progressive and clearly idiopathic. Mayo did a huge number of tests way too many to list - 15 or so?? Prior to going, my thinking was lower back issues causing the PN. Diagnosis was sensory motor PN both large and small fiber. They could not give me a cause and suggested some genetic testing and PT. I decided against generic testing. I did get a test for CMT, negative. PT did help for a while but could not show improvement, so I had to step out. Improvement is necessary for insurance to pay which to me is nuts. Ed

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@hsrikantan

Yes, I am highly interested in getting details on "May Clinic on Neuropathy/chronic pain" program, if they have one????
BTW, any official from Mayo clinic monitor these discussions or they just host this platform / hub for individuals communicate/ exchange information?
Currently just get random responses from individuals i.e.: Helpful, Hugs etc. Although this is very nice, it really does not help / contribute to addressing real issues / suffering of patients like me!
Thank you,
Hossur Srikantan

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@hsrikantan, Mayo Clinic Connect is an online forum where patients and caregivers share their experiences, find support and exchange information with others. You can read more about Connect and how it is moderated here:
- About Connect https://connect.mayoclinic.org/blog/about-connect/tab/aboutconnect/
- Why and how it is moderated https://connect.mayoclinic.org/blog/about-connect/tab/moderators/#ch-tab-navigation
- Community Guidelines https://connect.mayoclinic.org/blog/about-connect/tab/community-guidelines/#ch-tab-navigation

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@lewin

Thank you so much. How do I find out which plans they accept? I am in my local hospital plan. Don't you also need a referral from your doctor?
Thanks again.

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It says on their website that referrals aren't required.

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@flaherty2185

I have been suffering from peripheral neuropathy brought on by chemotherapy since October 2022. The symptoms have not declined, in fact they have worsened. I contacted the Mayo Clinic earlier this year, requesting an evaluation and possible treatment with scrambler therapy (Calmare.)
I was turned down with the response basically that Mayo cannot treat the vast number of people requesting treatment. Through my research I have found an independent clinic in Wisconsin that offers scrambler therapy. This clinic is one of the very few "Calmare Certified" treatment facilities in the United States. While I would have preferred treatment through a medical facility, and the Mayo Clinic in particular, the Wisconsin treatment center would work best for me given its location and certification. Has anyone sought and received Calmare treatment through one of the certified treatment facilities?

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I have just recently been on contact with this clinic in Wisconsin. Did you ever end up getting treatment there?

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@rwinney

Hi @lewin - to Laurie's @roch point, my Medicare plan was accepted at Mayo Clinic Florida. I certainly understand your frustration though. I learned things the hard way regarding insurance and began to make "insurance acceptance" one of my first questions. Noone wants wasted time. Typically a medical professional gives attention to insurance acceptance early on.

Sorry you had an unfortunate experience. I wouldn't give up on Mayo yet. Medicare open enrollment time is upon us. I actually switched my medicare insurance plan in order to be seen at Mayo and it was worth it.

Have you considered switching your Medicare insurance to one that Mayo does accept for the benefit of going there? Just a thought.

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Hi there, you ask about Mayo clinic. I was just there recently and I just called them up and talked to him on the phone about everything and then I did not need a doctor 's report for me to go there. But I did ask my doctor to send them one to get me in faster. That's what I was told to do so I don't know but I have Medicare plus blue and they accepted me. I have not got a bill yet and I was there just a couple weeks ago. Maybe 3 weeks for neuropathy. I had a doctor in the neurology department called Sarah berini. Wonderful doctor. Very educated. Even before they did any tests they set you up with an appointment but you have to wait. I waited maybe 4 months. Maybe a little longer to get in but it was well worth the experience. As far as my neuropathy goes I have small fiber neuropathy. Also they believe it to be genetic. They did all kinds of tests on me but unfortunately there's nothing they can do for the neuropathy other than gabapentin vitamin B12 cymbalta and I was told I could get some kind of a pain stimulator put in my back if I chose to do that. And of course they said maybe to get some ointments to put on My feet the neuropathy is just starting in my hands. They didn't tell me what to do about that. Other than that, there's not really anything you can do for it at this point in time. I'm sorry to tell you that it is a very painful process. Mine started years ago. Was just like water dripping down my leg or bugs crawling on my legs and then it started making my feet really hot like I was walking on very hot coals. Then a few years later my toes starting with the big toe started to get numb. So at this point in my life I have very numb feet. Both of them up my legs not quite to the knees. And I'm also having trouble now with my balance. I now have to use a walker but now I'm getting the legs are getting weak so I don't know where I go from here. If you have any other questions just let me know. I'll be happy to answer them for you if I can. Otherwise just make a call to Mayo clinic, it's the easiest setup. They'll tell you exactly step by step what you need to do. Then you'll need to call your insurance company and ask them if they accept your Medicare. I don't understand why they don't. Hopefully they do mine because that's what I have. But I also have Blue Cross Blue shield so I don't know if that made a difference. Good luck to you, carolyn

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I also was seen by Mayo Clinic in Rochester, MN. I had multiple MRIs, EMG, NCS, and extensive blood tests. My abnormal results were EMG, NCS, and Anti-GM antibodies. My clinical symptoms are unilateral Foot Drop, electric-like pain in my foot, fasciculations, leg weakness. This far, I am in a wait-and-see diagnosis of Peripheral Neuropathy. At the suggestion of my NJ neurologist, I will be starting a course of IVIg therapy, with a presumptive diagnosis of MMN. If this therapy works, it is a strong indication that I have MMN. I also see a Pain Management MD who prescribes 2000 mg/day of gabapentin. I have learned to be my Own Advocate.

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