I think she is referring to centers such as jack miller, cornell, hopkins and Shands is the one in jacksonville.

--along with the one at Massachusetts General in Boston.

The key with all of these is that they are stand alone neuropathy centers staffed by experts in the field that also do research into the causes and manifestations of neuropathy--very valuable, as they are generally familiar with the latest knowledge. And, they can usually provide more sophisticated testing than even most hospitals (i.e., skin biopsy, sudomotor axon relex testing, nerve autoantibody assays).

I don't know what would have happened to me had I not managed to wrangle an appointment at Cornell-Weill, where a skin biopsy was done on me the first day I was there--it showed I had significant small-fiber damage, and it was the first test, after a mass of others, that was unequivocally abnormal. Suddenly, my symptoms were credible.

Joe & Glenntaj,

Yes, this Neuropathy center is in Jacksonville and it's called the Neuropathy center Shands/Jacksonville, related to Shands hospital in Gainesville.

I had a punch biopsy done here when I saw my neurologist for the 1st time. He sent me to a surgeon who did the biopsy and sent it to a lab in New York and it came back as small fiber neuropathy. As far as any other tests done, no nothing. I had an appointment with my neuro a week ago and I told him I thought that my neuropathy was going into my stomach, back, butt and hands. His answer was, well thats what happens when you have neuropathy. I could not believe he said that to me. I mean I do understand that it can happen like that, but have some tact, which he lacks. He didn't even suggest to run any tests for other forms of neuropathy.

I just hope when I go to Jacksonville, that they will do a better job then my neuro did here. I don't want them to look at my medical records and say, yes you have PN, now go home.

I know they have neuropathy centers in Miami, Arizona, Jacksonville and I am not sure where the others are. But if you go on neuropathy.org you can find the centers located on that web site.

I have looked at Dellon Institute and we don't have one in Florida, plus I know mine is from damage from my diabetes.

Be sure to take the test results you have already done with you. Especially the skin biopsies slides. Have they asked for them? Taking them could save you big bucks. As with all the other testings. It also will give them a baseline to work with. Good luck.

Billye

...I have an appt. at Shands Jax in a couple of weeks ,If I make it before you I will let you know..Tom..N/E. Florida

It sounds like you are concerned that the small fiber neuropathy may be autonomic. Make sure where you are going next, has an autonomic lab. There are not that many places that have autonomic labs, and that is what is needed. Tilt Table, QSARTS, Thermoregulatory Sweat Test, the Cardiac stuff R to R breathing, Valsalva etc. Oh and you probably need a GI consult for transit time to see if you have GI involvement.

Vanderbilt has an Autonomic Lab.

There are several up north here, I think most of them were mentioned already.

Also, how much has been done to discover the CAUSE of your neuropathy?

Hi Michele, even though that you know you have diabetes it is still a good idea to get checked out properly by the PN experts to make sure there isn't something else contributing to your nerve damage as well.
Just a skin punch biopsy without any other testing is very slack, there are many more standard tests that should have been done, at the very least an EMG should have been done as well to see if there was any large nerve involvement, even if you not showing any signs of it, at this present time.
I am glad you seen that the first neuro was incompetent when it comes to Neuropathy, that's nothing unusual, many of us here have sacked lots of neuro's that don't have a clue when it comes to PN.
good luck anyway
Brian

Alot of Neuro's like to say ,if your a Diabetic that's the cause,why
because it's easier then doing there job. It very well is one reason,
but there are so many more..Take all records,they will repeat,but it
helps them know what wasn't done,alot I bet. Heard very good things
about it,god luck to both of you...Hugs Sue

He did a nerve test before the punch biopsy was done and that was it. I have a new appointment with a new neuro and I sure hope he can do a better job then this one. LOL I will keep you all informed of my progress. Thanks.... Michele

I am so jealous. You get to go before me. I am waiting on them to make the appointment for me. Please let me know how it went and what they did.
What type of PN do you have? Do you know what your's was caused by?

Where in Florida are you from? I live in Tallahassee, so it won't be too far of a drive. I go see a pain management specialist next thursday. I need something done with this pain. I could scream sometimes... but usually I end up crying because of the pain.

Take care..........by the way we are having some rain and I am lovin it.