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

Keep me informed.
 

:p 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? :eek:

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...:Bawling: 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.:partytime2:

Thanks
 

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:yikes: I will keep you all informed of my progress. Thanks.... Michele :hug:

Hi Michele,

In one of your messages you say: "I could scream sometimes... but usually I end up crying because of the pain".

Can you describe the pain? Is it extra, extra bad burning, tingling, prickling or something else altogether? I hear about neuropathic pain and don't quite know what it is or how bad it can get.

I don't want to highjack this thread but Michele and others with neuro pain how would you describe neuropathic pain?

I just know what discomfort that I have and although very annoying and it wears me down, I haven't started to take any Lyrica or other PN targetted pain meds. Just quite a bit more paracetamol (general analgesia) the past few months.

Apart from 24/7 burning/buzzing/fasciculations, two examples - it is summertime here and everytime I go into an airconditioned building or turn our AC on, it's like my lower legs have the sensation of being wrapped in an ice blanket and it is not at all pleasant. Way different to what I have ever experienced AC to be ever before. (This is my first summer with it). Conversely when having a shower the water on the lower legs feels way hotter than on eg. the shoulders which is ridiculous as the water cools, if anything, as it falls. All the feelings are confused and definitely weird!

Look forward to hearing how you go at the specialist neuropathic centre.


Megan

Megan,

My pain consists of a sharp burning pain that hits my feet, usually my toes or the tops of my feet. If it wasn't for the medicine that I take, I probably would be in pain 24/7, but for the times when it somehow misses and doesn't work, that's the kind of pain I feel. By the way, I take 6x 300mg of Neurontin, 3x 200mg of tegratol & 1x 60mg of Cymbalta. Too me, the cymbalta is for my depression, they say that it also helps pain.

As far as pain in other parts of my body....... I just have a sharp, kind of like lightening hitting my body, pain from the top of my back to the end of my butt feeling. I have never been hit by lightning, but I can just imagine that it could feel that way.

When I take a shower, the water falling on my feet don't feel good, it really is a strange sensation. Just like when I wash my hands, that feels wierd too. I still have feeling in my feet, so I can still feel hot or cold. The only symptom I have is just the pain. From what I have read, which has been a lot in the last few months is if your pn is from diabetes, this is one of the most common complaint that pn'rs have is the pain. I told my mom the other day, that I can't wait for my nerves to die so I wouldn't have to feel this pain. I know that seems harsh, but at times that's how I feel.

I will certainly keep everyone informed when I go to the neuropathy center. Do you have anything in Australia to go to?

Michele

I appreciate your reply Michele!

I'm not sure whether we have any Neuropathy-only diagnostic/treatment centres where all stops are pulled out and extensive testing is done to elicit the cause of PN and other neurological diseases. If there is, I'd love to know about them.

That lightning type pain must be what they call lancinating pain and sounds horrible. I have only had that a couple of times since the onset of PN but they didn't last long although they was quite excruciating for the few seconds that they lasted.

Count down
 

Well, just want to let everyone know that my referal came through to go to the Neuropathy Center in Jacksonville Florida on March 25th. I will keep everyone posted.

Thanks,
Michele:hug:

OH Michele! That is SUCH
 

Good news for you! I truly, with all my heart hope that you can and do FIND ANSWERS! That is often all we want....aside from any relief that can be gotten. [Well, maybe the other way around at times?]
It's often tho, and I have to warn you here, a long-drawn-out and tedious process. Takes test after test, MRI after CT scan and then Blood work out the wazoo! Often for a 'DUH? Don't know' in the end from docs. I'm going to cross my fingers when I can and my legs...don't/can't do eyes or toes well at all anymore and I will THINK hard that you get ANSWERS AND TREATMENTS that work!
End of the month huh? Well that isn't so far away really, and I for one will be waiting to hear all.
I have to warn you tho? The worst, truly worst part? Is the waiting for the tests results AFTER? Some take 3 weeks to come back for bloodwork and it IS an agonizing wait! I've been thru it 3 times for 3 different big issues and it's the worst-don't be surprised if you find yourself bouncing off the walls ceiling floors and all mentally if not physically...it comes with this territory.
Hang in there and keep up that HOPE! - j :hug:'s