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 | Dec 31, 2020

@ggs, If you are looking for Rochester Lodging information, here is a page that you might find helpful - https://www.experiencerochestermn.com/mayo-clinic/hotels/charitable-lodging/.

REPLY
magalimonica | @magalimonica | May 20, 2023
In reply to @bkruppa "Ok. * Caudal nerve blocks with no success. * Acupuncture with no success. * Pudendal nerve..." + (show)
@bkruppa

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.

Jump to this post

Did your wife get better? I tried a SI joint injection and it helped the PN pain. Has she tried that? Thanks.

REPLY
Joanne Campbell | @jkcampbell | May 21, 2023

I went to Mayo a year ago. Loved my doctor, but he had no answers. I am a survivor of a Stem Cell Transplant from Mayo 9 years ago and believe in Mayo. At this point there is nothing left to test. That being said, doctors are human so I keep following SFN research and hope someday there will be an answer.

REPLY
magnum52 | @magnum52 | May 22, 2023

Yes I went to the main campus of the Mayo Clinic in Rochester, Minnesota years ago. I have Idiopathic Small Fiber Neuropathy and was diagnosed over 6 years ago. I spent a week at Mayo and underwent exhaustive testing. I basically had about a 1% chance they would find a cause but they didn’t. I have also been elsewhere as well. ISFN is a frustrating diagnosis. I retired from the pharmaceutical industry and I can tell you there is nothing of any significance in research that will soon be approved by the FDA. There is one interesting drug called Engensis that is in Phase III trials, but the company that owns the compound will not respond to any inquiries from patients whatsoever. All drugs out there now they use are to treat symptoms and not the cause. If they do find a treatable cause, consider yourself extremely lucky! My trip to Mayo just confirmed what I already knew.

REPLY
2 replies
Mentor
John, Volunteer Mentor | @johnbishop | May 22, 2023
In reply to @magnum52 "Yes I went to the main campus of the Mayo Clinic in Rochester, Minnesota years ago...." + (show)
@magnum52

Yes I went to the main campus of the Mayo Clinic in Rochester, Minnesota years ago. I have Idiopathic Small Fiber Neuropathy and was diagnosed over 6 years ago. I spent a week at Mayo and underwent exhaustive testing. I basically had about a 1% chance they would find a cause but they didn’t. I have also been elsewhere as well. ISFN is a frustrating diagnosis. I retired from the pharmaceutical industry and I can tell you there is nothing of any significance in research that will soon be approved by the FDA. There is one interesting drug called Engensis that is in Phase III trials, but the company that owns the compound will not respond to any inquiries from patients whatsoever. All drugs out there now they use are to treat symptoms and not the cause. If they do find a treatable cause, consider yourself extremely lucky! My trip to Mayo just confirmed what I already knew.

Jump to this post

My experience was pretty much the same after 20+ years of living with numbness that started in my toes and finally deciding to see a Rochester Mayo neurologist for a diagnosis which was idiopathic small fiber PN. That's what brought me to Connect where I started my journey on learning as much as I can about my condition and what possible treatments are available. I wish the research focus was on healing/repairing the damaged nerves vs treating the symptoms. Just my two cents.

REPLY
1 reply
margaret10 | @margaret10 | May 22, 2023

I went to the Mayo in 2013 and had a week of testing. They had no idea of the cause, but thought it might be due to lumbar radiculopathy (which turned out to be unrelated) or genetic (but they would not do gene testing because there was no gene therapy available). Turns out, 10 years later, that I do have two mutant genes that likely are causing the neuropathy (CMT2) and there is still no gene or other therapy that cures or reduces the pain. The mutations both affect mitochondrial function and I've been diagnosed with mitochondrial dysfunction, not producing enough ATP energy for cellular demands, and my peripheral neurons are slowly, and very painfully, dying. You don't have to go to the Mayo to get your whole genome sequenced - your local neurologist, geneticist or endocrinologist can order the test for you. I recommend whole genome sequencing, not whole exome sequencing, because you'll get the whole picture, genes plus regulatory and other DNA regions that may have a bearing on your problem. Good luck.

REPLY
heyjude530 | @heyjude530 | May 23, 2023
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.

Jump to this post

I haven’t been diagnosed yet, but pretty sure I have Neuropathy in my feet. Also having pins and needles and numbness in one arm, going down to my thumb and fingers like a vibration, pretty strong. But I also suffer from migraines. So your diagnosis makes me think that is what I have. What did they tell you about it? And is there any treatment?

REPLY
1 reply
Mentor
John, Volunteer Mentor | @johnbishop | May 23, 2023
In reply to @heyjude530 "I haven’t been diagnosed yet, but pretty sure I have Neuropathy in my feet. Also having..." + (show)
@heyjude530

I haven’t been diagnosed yet, but pretty sure I have Neuropathy in my feet. Also having pins and needles and numbness in one arm, going down to my thumb and fingers like a vibration, pretty strong. But I also suffer from migraines. So your diagnosis makes me think that is what I have. What did they tell you about it? And is there any treatment?

Jump to this post

Welcome @heyjude530, I think that certain types of migraine headaches can cause symptoms similar to what you are describing.

"During a migraine attack, a person may experience a sensory aura which can involve numbness and tingling in the face, arms, fingers, ..."
--- Numbness and Tingling - Migraine Symptoms: https://migraine.com/migraine-symptoms/numbness-tingling

Have you discussed the symptoms with your doctor?

REPLY
magnum52 | @magnum52 | May 23, 2023
In reply to @johnbishop "My experience was pretty much the same after 20+ years of living with numbness that started..." + (show)
@johnbishop

My experience was pretty much the same after 20+ years of living with numbness that started in my toes and finally deciding to see a Rochester Mayo neurologist for a diagnosis which was idiopathic small fiber PN. That's what brought me to Connect where I started my journey on learning as much as I can about my condition and what possible treatments are available. I wish the research focus was on healing/repairing the damaged nerves vs treating the symptoms. Just my two cents.

Jump to this post

The drug Engensis looks extremely interesting. It is a Korean company called Helixmith. The drug is finishing up Phase III trials which is the last phase of study. Hopefully they will submit an NDA ( New Drug Application) to the FDA this year. It is an injection. This could be a real game changer if it makes it through.

REPLY
1 reply
jeffls | @jeffls | May 24, 2023
In reply to @lois6524 "John, thanks for your reply. I'm so concerned that individuals with PN are spending hundreds (even..." + (show)
@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!!

Jump to this post

I don’t think we can make a blanket statement "that neuropathy can't be cured",it depends on the cause of which there seems to be hunderds For example, peripheral neuropathy caused by a vitamin deficiency can be treated -- even reversed -- with vitamin therapy and an improved diet..

REPLY
View MoreView Less
Please sign in or register to post a reply.