Worth visiting Mayo Clinic for evaluation of idiopathic neuropathy?

Without going through all my old files, I can tell you that it was a complete soup-to-nuts evaluation, starting from scratch, that went on for four days. They looked at previous MRIs, EMGs, blood work, etc., but didn't rely on anyone else's work, and did every relevant and appropriate test themselves. The first two days, I think there were 4 or 5 tests each day. There were two neurologists looking at the test results as they went along. On the fourth day they discussed having me come back for another nerve biopsy, but they ultimately decided to try IVIG first, since any nerve biopsy is going to do some degree of permanent damage.
I left Rochester very impressed with the thoroughness of the testing and evaluation. One great advantage is that the team is all there on the scene and are talking to each other. (Most of us have had, or know of, experiences where lack of communication between members of the treatment team has caused problems. The way the comprehensive visits to Mayo are structured, this is not an issue.)
My only "complaints," if you can even call them that, is that the treatment approach was very conservative based on my age at the time (76), and I wish there had been more discussion of a physical therapy and exercise program. But what Mayo focuses on is diagnosis, especially of difficult or idiopathic disorders -- and they are very good at that. Once you have an accurate diagnosis, there are many local options available for treatment programs.

Without going through all my old files, I can tell you that it was a complete soup-to-nuts evaluation, starting from scratch, that went on for four days. They looked at previous MRIs, EMGs, blood work, etc., but didn't rely on anyone else's work, and did every relevant and appropriate test themselves. The first two days, I think there were 4 or 5 tests each day. There were two neurologists looking at the test results as they went along. On the fourth day they discussed having me come back for another nerve biopsy, but they ultimately decided to try IVIG first, since any nerve biopsy is going to do some degree of permanent damage.
I left Rochester very impressed with the thoroughness of the testing and evaluation. One great advantage is that the team is all there on the scene and are talking to each other. (Most of us have had, or know of, experiences where lack of communication between members of the treatment team has caused problems. The way the comprehensive visits to Mayo are structured, this is not an issue.)
My only "complaints," if you can even call them that, is that the treatment approach was very conservative based on my age at the time (76), and I wish there had been more discussion of a physical therapy and exercise program. But what Mayo focuses on is diagnosis, especially of difficult or idiopathic disorders -- and they are very good at that. Once you have an accurate diagnosis, there are many local options available for treatment programs.

@rasmataz49 I just filed an appointment request and they had someone call me. There is a process and insurance probably helps get in.

My experience at Mayo Clinic Neurology involved an extensive evaluation, including a detailed history and multiple tests across different departments—such as a painful EMG , hearing and heat studies, bloodwork, etc.

$$$$ later there was no clear cause identified for my idiopathic peripheral neuropathy. I was referred to a pain specialist who recommended starting gabapentin and gradually increasing the dose, which did not provide meaningful relief and the side effects outweighed any benefits. In short, I did not find the process helpful.”

Without going through all my old files, I can tell you that it was a complete soup-to-nuts evaluation, starting from scratch, that went on for four days. They looked at previous MRIs, EMGs, blood work, etc., but didn't rely on anyone else's work, and did every relevant and appropriate test themselves. The first two days, I think there were 4 or 5 tests each day. There were two neurologists looking at the test results as they went along. On the fourth day they discussed having me come back for another nerve biopsy, but they ultimately decided to try IVIG first, since any nerve biopsy is going to do some degree of permanent damage.
I left Rochester very impressed with the thoroughness of the testing and evaluation. One great advantage is that the team is all there on the scene and are talking to each other. (Most of us have had, or know of, experiences where lack of communication between members of the treatment team has caused problems. The way the comprehensive visits to Mayo are structured, this is not an issue.)
My only "complaints," if you can even call them that, is that the treatment approach was very conservative based on my age at the time (76), and I wish there had been more discussion of a physical therapy and exercise program. But what Mayo focuses on is diagnosis, especially of difficult or idiopathic disorders -- and they are very good at that. Once you have an accurate diagnosis, there are many local options available for treatment programs.

In my case, going to Mayo/Rochester for a full workup and evaluation was definitely worth it. My symptoms first appeared almost 40 years ago (around 1987), but it wasn't until the early 2000s that my PCP referred me to a local neurologist, who in turned referred me to Johns Hopkins, I spent about 15 years going to Hopkins and another teaching school, with too many MRIs to count, plus many NCT and EMGs, and two nerve biopsies. The best they could do was to call it ideopathic. Finally, in 2019 I went to Mayo for a four-day workup. Their tentative diagnosis was CIDP, and I was also told that if treatment didn't work, I'd be in a wheelchair in five years. After I responded to IVIG and displayed moderate improvement, they were 99% certain of the diagnosis. I'm now 83, and have continued to stabilize, with very gradual improvement and reduced falls. I walk with one or two assistive devices -- but I'm still on my feet. Every case is different, but in my case it was certainly worth the trip to Mayo.

@edva1943

what is IVIG.

Terry

@terryjee Intravenous Immunoglobulin = IVIG. Often given on a regular schedule over a long period of time.