So we got some feedback on Mayo, what about John Hopkins? Are they better? Do they have an intensive diagnostic process- or is it basically the same work up we all get through our local neuros?

Don't know that they are better but they have a whole staff of doctors in neurology, etc. Check this out:

very interesting I think.

http://health.usnews.com/best-hospitals/rankings

Mayo Clinic in Rochester, MN is #1 and Johns Hopkins is #3 in neurology.

Another site:

http://www.medscape.com/viewarticle/848443

Those rankings show BOTH in the top 5, so I don't think that is a big difference. But ask the people that have been to each and you might get a different answer.

I'd vote for Hopkins after going to both.

Glenntaj posted a detailed reply about this on the Mayo thread.

I think the work-up is basically the same in both locations...as they all have the same testing available. It comes down to the physicians...the end game.

It also comes down to the patient and what is going on. If it is obvious PN and testing positive then anyone (anywhere) can come up with the same Dx. But if it is not evident what the cause is or even that PN exists, then I'd go to Hopkins where they think 'outside the box'. There are also great facilities that Glenn mentioned in that post.

There are people that have had great experiences at Mayo, but posts here (and other forums) reveal that more often than not, people don't have a very good outcome at Mayo. They by far have the BEST logistics and organized operation though!

Are you posting about the Mayo Clinic in Rochester, MN? Or another one of the clinics. Did you go to the Mayo Clinic in Rochester, MN or one of the other ones. It would be interesting to know which Mayo Clinic did others visit and did not have a very good outcome. I have heard that as well and then find out that it was not the Mayo Clinic in Rochester, MN but one of their other clinics.

It certainly can depend on the physicians as well.

There are several individuals on the FB SFN group reported their disappointment with Mayo Rochester, MN. Some seem disappointed with their Neuro there and others are disappointed that the cause for their neuropathy was not uncovered. The Mayo clinic topic pops up there about once per week. Maybe more because I don't keep up with all the posts in that group.

I traveled to the main campus in Rochester, MN. I spent a week there.

Most of the reports I've read (like Madisongrrl), including on this forum, are about Rochester...but sometimes they don't specify which campus. There are numerous members on the Sjogren's forum (that have PN) who have gone to Rochester, and haven't had a good experience...but it involved the rheumatology dept as well as neuro dept.

--from what I have been able to deduce (a lot of it from the literature that comes out of the researchers/doctors there) is very good at determining conditions of the central nervous system--dealing with unusual seizures, headaches, presentations of demyelinating disease. When it comes to peripheral nervous system situations, while Dr. Dyck is a world-renowned reseracher, less seems to come out of there than out of places like Johns Hopkins or Cornell-Weill.

Hopkins is the place skin biopsy was invented and normed (see papers by McArthur, Cornbluth, Mogehkar, etc.) and there is a lot of research there into rheumatological causes of neuropathy. Cornell-Weill is probably the leading research center into NON-rheumatological causes of autoimmune neuropathy (they have done pioneering work into anti-nerve antibodies and the connection between celiac and neuropathy, partly due, I am sure, to the access to the Celiac Center at Cornell/Columbia--both Cornell and Columbia are part of the NY Presbyterian health alliance--see papers by Latov, Sander, Chin, et. al.).

What I've always liked about Hopkins and Cornell is that the researchers there also run clinical practices; there's a lot of cross-pollination between clinic and lab.

So, in your opinion John Hopkins would be a waste of time if I already go to Weil Cornell?
I have been to 4 rheumatologists. Two of them local in upstate NY.

1.One who said my ANA is probably just due to the fact that I had EBV at one point and he doesn't think I have AD because my joints are so good.

2.Then I went to Weil Cornell/Columbia Pres and they did thorough testing and came up with nothing (except the ANA even more elevated). I was told the ANA can fluctuate and also be due to other inflammatory causes. The doctor there also commented on how great my joints were. He thought I had some muscular injury and told me to wear a cervical collar, try cymbalta- if it doesn't help- throw it out and call him in a few weeks to check in and to make an appointment with a physiatrist there. I never did follow up with him.

3. The neuromuscular doctor that I settled with at Weil Cornell sent me to a rheumatologist from Mount Sinai and she came up with a borderline lab report for sjogrens lip biopsy. She said it wasn't conclusive. She offered plaquenil, and said this might be autoimmune. I then started getting the livedo from the sun all over my thighs (where my most significant nerve damage is (according to sfn biopsy). I think then she determined it must be autoimmune.

4. There wasn't really any point to travel far to see her since she had no plans or real help so I found a young local rheumatologist locally, gave her all my files and she was intimidated because there was no sure diagnosis, but that she would give me plaquenil if I wanted.

All kind of a waste of time.
Especially since my two daughters are randomly getting the livedo on there thighs (all of us within 2 weeks of each other). It would be a heck of a coincidence that all of us came down with an autoimmune vascular problem at the same time.

So I guess after all of this ......
It doesn't seem to me that Weil Cornell is the best place to figure out non autoimmune causes of neuropathy because I have had no luck. If they are the best, and John Hopkins is third..... that's not looking so good for me.

If you are looking to Dx autoimmune neuropathy, then I would definitely stay away from Mayo UNLESS your labs are clearly positive for autoimmune condition. Mayo is very picky about meeting criteria in regards to autoimmune conditions...they rarely Dx sero-negative autoimmune conditions.

Hopkins does have an extensive rheumatology dept....which you'll need as well as neurology.

I can only say from experience that Hopkins is thorough. My neurologist there was extremely competent. When the findings confirmed a suspected hereditary neuropathy they pretty much lost interest as there is no real treatment, but my skin biopsy showing no small nerve fibers has been a blessing as far as pain management.
Whether it is worthwhile for you would have to be weighed against the costs and inconveniences involved. I live within 60 miles. Unfortunately there aren't always answers as this forum shows, but if you an interesting case, Hopkins may be the place.