Anyone go to a Mayo Clinic?

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)

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.

Liked by Dee, Alma Villarreal

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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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@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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@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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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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@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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@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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@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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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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@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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@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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I would like to echo the post by @cwm1, although my neuropathy is idiopathic. I was diagnosed by a neurologist at Mayo Clinic Rochester and was looking for a cure. I only had numbness with no pain and the neurologist told me there are no medications or topicals that will do anything for the numbness. The neurologist was very thorough and took the time to answer all of my questions. Even though I left the appointment disappointed, I knew it is what it is and that is what started my search for something that might possibly slow down the progression or help with the numbness.

That search brought me to Connect where I've met many other members with similar symptoms on their own search journey. It's not a coincidence. To me it's confirmation that neuropathy has no cure but members here have shared what has helped them reduce or eliminate the symptoms which gives us a way return to a new normal for our lives. Maybe we can't do all the things we used to do but it does give us a way to keep moving towards a more normal life.

Mayo Clinic Connect gives us the patient a resource that even experienced specialists would envy (IMHO) – the ability to ask questions of other members with similar health conditions and symptoms. We can share our experiences and learn from each other. So thanks to all of you for being your own advocate and reaching out with questions, as well as sharing your own experience.

I am a small fiber peripheral neuropathy (numbness only in my feet and lower legs) work-in-progress. I am currently contemplating my next adventure for therapy. Maybe it can help you also.

> Groups > Neuropathy > Myofascial Release Therapy (MFR) for treating compression and pain
https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/

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John, thanks for your reply. I'm so concerned that individuals with PN are spending hundreds (even thousands) of dollars to find a cure. We may be able to reduce the symptoms/pain with some meds or devices, but there isn't anything that will 'cure' neuropathy. Please be careful!!

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@lois6524

John, thanks for your reply. I'm so concerned that individuals with PN are spending hundreds (even thousands) of dollars to find a cure. We may be able to reduce the symptoms/pain with some meds or devices, but there isn't anything that will 'cure' neuropathy. Please be careful!!

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Hi @lois6524, I have the same concern. Unfortunately I learned a little late and have spent a lot of money on things before I researched them only to find out they didn't help my symptoms no matter how great they sounded. After I joined Connect I found recommendations from others and a few sites that help you research the validity of some of the products preying on folks with neuropathy, including a discussion here on Connect.

Quazar's guidance about avoiding scams and snake oil cures
https://connect.mayoclinic.org/discussion/how-to-avoid-quacks-and-snake-oil-treatments/

FDA's Health Fraud Page
https://www.fda.gov/ForConsumers/ProtectYourself/HealthFraud/ucm539101.htm

NIH's National Center for Complementary and Integrative Health (NCCIH) which offers guidance about integrative health and how to evaluate it.
https://nccih.nih.gov/health/decisions

Google Scholar is also a good tool for doing your own research on the latest medical research — https://scholar.google.com/

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I was told that nerve fiber does not grow back in our lifetime. On the other hand, I read, on the Internet of course, that there are at least 100 causes of SFN and that if the underlying issue is resolved, then SFN will clear up in about 50% of the cases. It's beginning to look like there is no cure as no one has reported one on this site.

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@jager5210

I was told that nerve fiber does not grow back in our lifetime. On the other hand, I read, on the Internet of course, that there are at least 100 causes of SFN and that if the underlying issue is resolved, then SFN will clear up in about 50% of the cases. It's beginning to look like there is no cure as no one has reported one on this site.

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Hi @jager5210, here's an article from back in 2010 that does a good job of explaining the process for nerves to grow back but I haven't read of any success of it actually happening in a patient. I have no medical training or background but believe they can come back in cases of compressed nerves or surgery if the damaged is repaired. I don't think there is much hope if the nerve is dead but would sure love to hear from anyone who knows of success.

Science News October 2010 – How injured nerves grow themselves back
https://www.sciencedaily.com/releases/2010/09/100927141144.htm

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