1. < Neuropathy

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.

Mentor
John, Volunteer Mentor | @johnbishop | May 30, 2019

Hi @wisfloj -- I just posted that I was diagnosed at Mayo Clinic Rochester in another discussion here: https://connect.mayoclinic.org/discussion/1st-time-at-mayo-for-neuropathy/?pg=1#comment-302813

Hoping that others who have been to Mayo Clinic for neuropathy will also respond here or in the discussion above.

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1 reply
Mentor
Rachel, Volunteer Mentor | @rwinney | Jun 27, 2019

Hello. I was recently turned down by Mayo in Rochester, MN. I believe this to be due to the fact that I have already been diagnosed with Small Fiber Neuropathy and chronic migraine. Perhaps they can't do much more for me beyond my current treatment plan. I was disappointed.

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4 replies
wisfloj | @wisfloj | Jun 28, 2019
In reply to @rwinney "Hello. I was recently turned down by Mayo in Rochester, MN. I believe this to be..." + (show)
@rwinney

Hello. I was recently turned down by Mayo in Rochester, MN. I believe this to be due to the fact that I have already been diagnosed with Small Fiber Neuropathy and chronic migraine. Perhaps they can't do much more for me beyond my current treatment plan. I was disappointed.

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Thanks for sharing that, discouraging I’m sure. I guess the best they’re offering is this support forum!

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Moderator
Colleen Young, Connect Director | @colleenyoung | Jul 4, 2019
In reply to @rwinney "Hello. I was recently turned down by Mayo in Rochester, MN. I believe this to be..." + (show)
@rwinney

Hello. I was recently turned down by Mayo in Rochester, MN. I believe this to be due to the fact that I have already been diagnosed with Small Fiber Neuropathy and chronic migraine. Perhaps they can't do much more for me beyond my current treatment plan. I was disappointed.

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Hi @rwinney, it sounds like you have taken the appropriate steps to seek care at Mayo Clinic and naturally it is disheartening to not get an appointment. Unfortunately because Mayo Clinic has more requests for appointments than available openings, other factors do come into play. Appointments at Mayo Clinic are prioritized on the basis of medical need. Availability depends on the nature and urgency of the problem and Mayo Clinic's ability to help (as determined by a Mayo Clinic doctor). Our physician experts have likely reviewed your case with their colleagues. Their review led them to determine that Mayo Clinic cannot offer any further treatment for you at this time. Mayo’s goal is to provide the best care each patient needs, but does not want you to incur additional costs for evaluation or travel if there is not care to offer that is different from what you’re already receiving. Not a great answer to hear, I know.

@wisfloj, things might be different at Mayo Clinic FL. As mentioned above, it will depend an appointment availability and the complexity of care needed.

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bkruppa | @bkruppa | Jul 5, 2019

My wife has gone to the Mayo Clinic in Jacksonville several times. Although it is an excellent run organization I did not feel that we learned or found any solutions for the treatment of her nerve pain. The solutions were basically meds which is not what I was looking for. I want solutions and not meds.

I do a lot of research myself and found several state-of-the art techniques for the treatment of chronic nerve pain which the doctor's at Mayo didn't seem to know anything about. Some of the suggested specialized tests that were run turned out to be typical tests that we had already done at other facilities. Bottom line we didn't come away with any solutions for my wife's pain so now we are at other facilities who are applying some of the newer techniques that I've read about. Keep in mind that I am one opinion so don't be discouraged by my post alone.

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3 replies
wisfloj | @wisfloj | Jul 5, 2019
In reply to @bkruppa "My wife has gone to the Mayo Clinic in Jacksonville several times. Although it is an..." + (show)
@bkruppa

My wife has gone to the Mayo Clinic in Jacksonville several times. Although it is an excellent run organization I did not feel that we learned or found any solutions for the treatment of her nerve pain. The solutions were basically meds which is not what I was looking for. I want solutions and not meds.

I do a lot of research myself and found several state-of-the art techniques for the treatment of chronic nerve pain which the doctor's at Mayo didn't seem to know anything about. Some of the suggested specialized tests that were run turned out to be typical tests that we had already done at other facilities. Bottom line we didn't come away with any solutions for my wife's pain so now we are at other facilities who are applying some of the newer techniques that I've read about. Keep in mind that I am one opinion so don't be discouraged by my post alone.

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Thank you bkruppa, it’s not an easy road and I agree - I too just want to know the cause and then solutions, not an rx! Please continue to share your experiences and hopefully successes. I’m sorry for your disappointment with MAYO, You've saved me time, money and dashed hopes...

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peggyn | @peggyn | Jul 5, 2019
In reply to @bkruppa "My wife has gone to the Mayo Clinic in Jacksonville several times. Although it is an..." + (show)
@bkruppa

My wife has gone to the Mayo Clinic in Jacksonville several times. Although it is an excellent run organization I did not feel that we learned or found any solutions for the treatment of her nerve pain. The solutions were basically meds which is not what I was looking for. I want solutions and not meds.

I do a lot of research myself and found several state-of-the art techniques for the treatment of chronic nerve pain which the doctor's at Mayo didn't seem to know anything about. Some of the suggested specialized tests that were run turned out to be typical tests that we had already done at other facilities. Bottom line we didn't come away with any solutions for my wife's pain so now we are at other facilities who are applying some of the newer techniques that I've read about. Keep in mind that I am one opinion so don't be discouraged by my post alone.

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I too would love to know what you are trying. Hopefully something is working. I have even thought of stem cell, but just not sure

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jager5210 | @jager5210 | Jul 5, 2019
In reply to @bkruppa "My wife has gone to the Mayo Clinic in Jacksonville several times. Although it is an..." + (show)
@bkruppa

My wife has gone to the Mayo Clinic in Jacksonville several times. Although it is an excellent run organization I did not feel that we learned or found any solutions for the treatment of her nerve pain. The solutions were basically meds which is not what I was looking for. I want solutions and not meds.

I do a lot of research myself and found several state-of-the art techniques for the treatment of chronic nerve pain which the doctor's at Mayo didn't seem to know anything about. Some of the suggested specialized tests that were run turned out to be typical tests that we had already done at other facilities. Bottom line we didn't come away with any solutions for my wife's pain so now we are at other facilities who are applying some of the newer techniques that I've read about. Keep in mind that I am one opinion so don't be discouraged by my post alone.

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Would you mind sharing some of the techniques you found and where they are located. Thank you

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1 reply
cwm1 | @cwm1 | Jul 5, 2019

I am a patient at Mayo in Jax. My neuropathy is a result of chemotherapy. I did see a dr there about it and didn’t really get any answers but my neuropathy is pretty mild. He did suggest some vitamins and therapy which I have done but it really didn’t help. He did not want to put me on medications because he felt mine was too mild to justify it and I completely agreed. I only went because the oncologist hoped it might be beneficial. However, I am a huge fan of Mayo Jax. I have yet to see a dr., nurse, tech or anyone else there that I didn’t think was vastly superior to anyone I have ever dealt with anyplace else.

REPLY
3 replies
peggyn | @peggyn | Jul 5, 2019
In reply to @cwm1 "I am a patient at Mayo in Jax. My neuropathy is a result of chemotherapy. I..." + (show)
@cwm1

I am a patient at Mayo in Jax. My neuropathy is a result of chemotherapy. I did see a dr there about it and didn’t really get any answers but my neuropathy is pretty mild. He did suggest some vitamins and therapy which I have done but it really didn’t help. He did not want to put me on medications because he felt mine was too mild to justify it and I completely agreed. I only went because the oncologist hoped it might be beneficial. However, I am a huge fan of Mayo Jax. I have yet to see a dr., nurse, tech or anyone else there that I didn’t think was vastly superior to anyone I have ever dealt with anyplace else.

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What type of therapy did you do and what vitamins?

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