[Karate Mom]

My neuro has suggested that I go to Mayo AZ for PN evaluation. Would love to hear from anyone who has anything to share regarding their experiences at the facility.

[barbaraq]

I am interested in doing this myself. Do you need a recommendation from your doctor? I know nothing about the process but am interested on anyone that had done this

[nilram]

I'm also considering this. It looks like you don't have to have a physician referral (unless your insurance requires it).

http://www.mayoclinic.org/becomingpa...ointments.html

The page does say, "All appointments are prioritized on the basis of medical need." When I was first diagnosed with ideopathic PN, I called them up and chatted with them about getting in. They said it could take up to two years, but if it was really critical, they have another list that could be up to six weeks. And that's IF they decide to take your case. But I hear Rochester is a great place to be seen at, you're well taken care of and they've got great expertise. Especially since your doctor is supportive, go for it.

[antonina]

I sent them all my records and they said they had nothing they could do for me since my PN was of too longstanding duration. (It had been 10 years since the chemo did its damage.)

I was sorry for that but if you can get there, DO IT!!

[BigDaddy]

There are three very positive things about my Mayo experience.
1) they were very efficient. Was there three days and every test was scheduled in that time period, sometimes on the fly. 2) they are patient oriented. Everyone pleasant and helpful, no sour pusses or people with attitudes. 3). They do all the tests that no one else can do.

Here are some negatives to consider.
My local neurologist cautioned me that Mayo was very " revenue conscious". They will run up the charges by duplicating test that were run elsewhere. They can do tests not available locally but they have no more knowledge than local neurologists. In my own case the Mayo DX was no more than a description of my symptoms. Their recommendation was to treat the symptoms and they suggested which drugs to try. That is not what I was there for or expected as an outcome.

I am not saying don't go. But in hindsight, both my primary doc and neurologist suggested that I go to a large teaching hospital like Hopkins or Cleveland Clinic.

[nide44]

Second on the Hopkins, or Cleveland, or Jack Miller, or Cornell-Weill.
Mayo has been repeatedly reported as not being aggressive about PN treatment. Lotsa tests but interpretation and treatment on the low side.
Rejection of those with long term PN problems. Don't want to get involved in long term treatment problems.
Most PN being chronic, this is not an attitude that I would want for my treatment.

[Peaceluvnsil]

Originally Posted by Karate Mom

My neuro has suggested that I go to Mayo AZ for PN evaluation. Would love to hear from anyone who has anything to share regarding their experiences at the facility.

My SIL spent two weeks there for treatment with her trigeminal neuropathy. She was there for two weeks while they poked and prodded and tested her and nothing really came of it. She got a DX but other than that there really wasn't much else. She still works with her family doctor and is still using meds as a way to treat her DX. I joined this site to try and find other avenues of treatment, I'm hoping to discover a new breakthrough from other patients with the same diagnosis.

[Susanne C.]

Hopkins will not necessarily yield a different result. They are thorough, competent, and knowledgeable, but there isn't always something to be done. I was evaluated there and given the option of further testing, but told that there was little chance of it helping, with which I agreed. I have hereditary, small and large fiber, sensory-motor neuropathy, which is progressive, and my only treatment is palliative.

[florida-val]

Originally Posted by Karate Mom

My neuro has suggested that I go to Mayo AZ for PN evaluation. Would love to hear from anyone who has anything to share regarding their experiences at the facility.

My husband was tranferred from our local hosptal to Mayo Clinic in Jacksonville, Fl when his intestine just stopped working due to AE. I must say that they gave him great care and diagnosed several things connected with the neuropathy and we learned quite a bit about his condition after just a few days in their care. As an in patient they ran many many tests and very quickly .
They also did find medication that has helped his intestinal problems so I can't say the trip and experience wasn't worth it

[Idiopathic PN]

Originally Posted by BigDaddy

There are three very positive things about my Mayo experience.
1) they were very efficient. Was there three days and every test was scheduled in that time period, sometimes on the fly. 2) they are patient oriented. Everyone pleasant and helpful, no sour pusses or people with attitudes. 3). They do all the tests that no one else can do.

Here are some negatives to consider.
My local neurologist cautioned me that Mayo was very " revenue conscious". They will run up the charges by duplicating test that were run elsewhere. They can do tests not available locally but they have no more knowledge than local neurologists. In my own case the Mayo DX was no more than a description of my symptoms. Their recommendation was to treat the symptoms and they suggested which drugs to try. That is not what I was there for or expected as an outcome.

I am not saying don't go. But in hindsight, both my primary doc and neurologist suggested that I go to a large teaching hospital like Hopkins or Cleveland Clinic.

From where are you in Florida? I am from Jacksonville. We are near the Mayo Clinic at San Pablo.
Anyway, for a long time, I was considering going to Mayo for a work-up. But, my insurance is not accepted at Mayo. My husband does not mind the expenses, but I mind. I have been going through several health problems one after the other for over 2 years now, so our co-pays have become substantial. Anyway, with all the posts about the experiences at Mayo, it seems not the practical route.