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.

paktoledo | @paktoledo | May 24, 2023
In reply to @magnum52 "The drug Engensis looks extremely interesting. It is a Korean company called Helixmith. The drug is..." + (show)
@magnum52

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.

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Thank you for the information!Pat

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ssjohns | @ssjohns | May 24, 2023

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.

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davelobb12 | @davelobb12 | Jun 3, 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.

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This is right on target! The next question should be WHY? Anyway what do you use to help with the symptoms?

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