Anyone go to a Mayo Clinic for neuropathy?

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.

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.

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.

During my journey to discover what was wrong with me, I did go to Mayo three different times and they could find nothing. I was diagnosed in December with PN was referred to Shands. My appointment is not until September and I am waiting for two months already. It’s nearly impossible to get an appointment but I will go. It’s a 2 1/2 hour drive from Tallahassee. Need to hire a driver because I don’t drive anymore. I’m really not holding out much hope that they can discover the cause. I think it’s the statins I’ve been taking for the last 30 years. Have difficulty walking and pain in my spine. On 6/14 I will be going to my pain doctor for a radio frequency ablation. Praying that will give me pain relief. Gabapentin is not doing the trick.

How do I apply to the Mayo Clinic for my back problems. I can barely walk with the severe pain. I live in Des Moine Iowa. Thanks.

How do I apply to the Mayo Clinic for my back problems. I can barely walk with the severe pain. I live in Des Moine Iowa. Thanks.

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.

Did they give you a specific reason for being turned down? I was going to apply also Had you already gone through all of the testing at another clinic with their results previously?