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)

@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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Great article John…thx. I guess that will turn this thread from those seeking cures to those seeking coping strategies.

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Yes took my wife to Jacksonville and saw dr shah. We are from New York and they where the only ones to diagnose her. I highly recommend you go see them it will give you peace of mind and help you.

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@jager5210

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

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Ok.
* Caudal nerve blocks with no success.
* Acupuncture with no success.
* Pudendal nerve blocks with no success.
* Dual beam laser techniques produced some reduction in pain but only lasted for a day or two.
* High dosages of vitamin C. Some research studies indicated some success in nerve healing but was no help for my wife's pain.
* Nerve conduction tests. Mayo said the results from these tests are inconsistent so they do not perform them anymore.
However, I would suggest this method could better pin point the source of pain or entrapment.
* Sacrotuberous ligament stretch/massaging. The pudendal nerve passes through this area. No success.
* New cryogenic (not the old techniques) freezing of the nerve. Still looking for someone who performs this procedure.
* MFR. Seems to help some but just started treatments so we need more time to evaluate.
* Spinal stimularors. We chose not to have this technique done for two reasons. First is that the companies who manufacture
these devices never performed testing on the pudendal nerve. Second, was concerned of side effects.
* Traction on the spine in case the spine is misaligned and causing pressure on the pudendal nerve. Haven't tried this yet.
* Yoga relaxation techniques. Haven't tried this yet.
* Tried all the suggested natural products (vitamins, herbs, etc.) with no success.
* X-Rays and MRIs to pin point entrapment areas. No success.
* Scar tissue nerve entrapment. In treatment now so no results yet.
* CBD oil. Helps take the edge off of the pain as does the CBD cream. Not long lasting.
* Of course ice and meds. Advil seems to help which would indicate an inflammation issue.
* Dry needling which is different from acupuncture.. Still researching the side effects of this procedure.
* Stretching exercises. No success..
* Oriental "Cupping". No success.
* Diets that include low sugar and high water intake. Sugar has been suggested to have a negative effect on nerve healing. Haven't
tried this yet. High water intake may help muscles and myofacial fluidity.
* Nerve transection (cutting of the nerve). Most doctors do not recommend this procedure as there are possibilities of
increased nerve pain after the procedure is completed.
* Spinal steroid injections at the root of the nerve. Haven't had this procedure. However, this apparently won't solve the pain
issues as it gives temporary pain relief. Therefore, this procedure has to be repeated often. Probably won't opt for this procedure.

That's all that comes to mind at this point in time. What is interesting is that there are days where my wife's pain level is very low. We go back through the previous day's activities and food intake and can't come up with anything unusual. This has been a long road for her with few success stories.

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Incredible post and effort. It will probably save people a lot of money. If you don't mind sharing, what caused your PN?

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@jager5210

Incredible post and effort. It will probably save people a lot of money. If you don't mind sharing, what caused your PN?

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Don't really know. Originally the pain was due to a bout of shingles. This pain was on a healing path but stopped getting better after several months. We suspect that something else kicked in (like nerve entrapment) and that is what we are dealing with at this time. This could have been due to months of inactivity during her shingles recovery period.

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Hi! On May 12th I flew from Portland OR to Jacksonville FL to start a 3 week lung transplant evaluation. Then 2 weeks later I returned for a iliac artery stint, returned home to Portland last Saturday. The evaluation was the most intense series of test for the whole 3 weeks. All of the staff were the most professional I have ever come across. I had a team of about 23 that took care of me. It was the best experience that I have ever had. Everything was through and on time.
My wife & I actually enjoyed ourselves the whole 3 week. Upon our return for the surgery it was the same great experience.

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@djallan

Hi! On May 12th I flew from Portland OR to Jacksonville FL to start a 3 week lung transplant evaluation. Then 2 weeks later I returned for a iliac artery stint, returned home to Portland last Saturday. The evaluation was the most intense series of test for the whole 3 weeks. All of the staff were the most professional I have ever come across. I had a team of about 23 that took care of me. It was the best experience that I have ever had. Everything was through and on time.
My wife & I actually enjoyed ourselves the whole 3 week. Upon our return for the surgery it was the same great experience.

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I know this is the neuropathy group but, My brother is on the waiting list at Barnes Jewish in MO for a double lung transplant. (Alpha 1 Deficiency) best of luck to you. I know the testing, repeated evaluations etc. are rigorous. Glad you found competent care

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@wisfloj

I know this is the neuropathy group but, My brother is on the waiting list at Barnes Jewish in MO for a double lung transplant. (Alpha 1 Deficiency) best of luck to you. I know the testing, repeated evaluations etc. are rigorous. Glad you found competent care

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Thanks!!!

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@johnbishop

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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I am taking my husband to Rochester for his appointment the end of January. He has fallen 5 times since the end of September, been in & out of the hospital here, had too many tests to count, seen numerous type of doctors…but finally the neurologist made a referral to the Clinic. The doctor told him he was a zebra in a medical treatment that only treats horses. I’m concerned on a couple of levels: 1) with his neuro issues he’s unable to travel by plane so we’re driving their & 2) driving that far in the winter…but we have to get a diagnosis!!!

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