Anyone Been to any Neuropathy Centers?
 

Hello, I was just curious if any one has been to an of the Neuropathy Centers that they have around the United States? If so, what have they done for you. :Scratch-Head:

I plan on going to one of the centers in Jacksonville soon and want to know what I can look foward too. Thank you for any help you can give me. :D

Michele :Crazy 2:

Is this like a medical chain???
 

Do you have a web site or something? I'm drawing a total recall blank about such things other than 'Dellon Institute' centers which might be in your area. Tho I don't know about that.
I bet if you go to the top blue bar and just use the search feature for 'Dellon' You mite find a lot more than you'd like to know about their approach.
All I could say is that IF they say the words: IF you qualify. Be very very wary.... It's kind of like going into a surgeons' office for a consult and he/she says...WE GOTTA OPERATE TODAY! or you'll die! HUH?
Me? I didn't have to experience such issues, I got very lucky with my second and third neuro opinons and they got me on my way to treatment. Honestly, IF I had not gotten full diagnosis and treatment [a year plus a couple of months after onset] I would probably be a permanent PN wheelchair person rite now. I've been properly treated for four years and have five 'wonderful' years with total to partial numbness and all that comes with it.
Soo, if you can give me more info on these places, I can get to you as much as there is to be found on them...
BTW? IF it is Dellon? Insurance doesn't cover their work...AT ALL! I've looked at that for other folks...
May your pain not get worse, but, at least be consistent! :hug:'s - j

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

The ones Joe mentions are highly recommended--
 

--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.

Results of tests
 

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

cowcntry..
 

...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