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Old 03-19-2018, 06:52 AM #1
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Default Best PN Treatment Center in USA

Can anyone tell me which center is known as being the best for treating PN?
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Old 03-20-2018, 03:20 AM #2
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Can anyone tell me which center is known as being the best for treating PN?
I am of the cynical viewpoint; they are all at least equally terrible. Some are probably worse than others.

You might have luck if the underlying cause of your PN is known, like B12 deficiency or diabetes, then you change your diet and it gets better. Otherwise they give you drugs like; amitriptyline, lyrica, gabapentin, cymbalta, which don't usually work, although they can be helpful for sleep problems. You might have some luck with them or supplements or who knows...!
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Old 03-20-2018, 06:33 AM #3
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Default Basically--

--you want a specialty facility.

These include:

The Cornell Weill Center for Peripheral Neuropathy (New York)
Massachusetts General Hospital neurology (Boston)
The Jack Miller Center (Chicago)
Washington University Medical Center, Neuromuscular Division (St. Louis)
The University of San Francisco Medical Center (San Francisco)
Johns Hopkins Medical Center (Baltimore)

There are probably others that would provide comprehensive testing and treatment approaches; these are the ones that have been research hotbeds into the condition over the years.
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Old 03-23-2018, 02:37 PM #4
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Thank you for posting this, Glenntaj. As always, very helpful information.

Do you any over the others? My neurologist has always recommended Mayo. Do you have views on that? It's really not a specialty facility, if I'm not mistaken, but his thinking was that they could run all sorts of advanced tests. But presumably so can the places you list here by just sending them off elsewhere, if they can't do it in-house.

Have others had experience at any of these places, especially positive ones?

I'm considering visiting a center this summer, since my condition is getting worse and worse each day.



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Originally Posted by glenntaj View Post
--you want a specialty facility.

These include:

The Cornell Weill Center for Peripheral Neuropathy (New York)
Massachusetts General Hospital neurology (Boston)
The Jack Miller Center (Chicago)
Washington University Medical Center, Neuromuscular Division (St. Louis)
The University of San Francisco Medical Center (San Francisco)
Johns Hopkins Medical Center (Baltimore)

There are probably others that would provide comprehensive testing and treatment approaches; these are the ones that have been research hotbeds into the condition over the years.
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Old 04-23-2018, 10:53 AM #5
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I think Mayo could also run a lot of advanced tests. I dig into the PN research from time to time and a well-respected researcher, P James Dyck, is there. There are a number of doctors there that list only PN as their interest, not the long menu of other neurological conditions. The big strength of the Mayo Clinic is the collaboration between doctors that's ingrained in their culture.

That being said, having followed this board for a long time, I've seen people post negative experiences about the Arizona clinic, mixed reviews at the Florida one. I've been inclined to check out Rochester, where Dyck is based.
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Old 04-23-2018, 09:48 PM #6
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I dug up one thread where this was discussed.

Visiting a Medical Center (Mayo, JHU, etc.)


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I think Mayo could also run a lot of advanced tests. I dig into the PN research from time to time and a well-respected researcher, P James Dyck, is there. There are a number of doctors there that list only PN as their interest, not the long menu of other neurological conditions. The big strength of the Mayo Clinic is the collaboration between doctors that's ingrained in their culture.

That being said, having followed this board for a long time, I've seen people post negative experiences about the Arizona clinic, mixed reviews at the Florida one. I've been inclined to check out Rochester, where Dyck is based.
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Old 05-08-2018, 12:28 PM #7
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I got my help from Integrative doctors and only Integrative doctors, who were willing to think out of the box and find the cause of my neuropathy, and they did. Neurologists were totally useless and labeled me idiopathic and were not willing to find out what caused it.
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Old 05-09-2018, 04:30 PM #8
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Thanks. I've been torn lately between trying Cleveland Clinic's neuro-muscular dept and an integrative doctor. I keep getting bounced around because I've seen the top neurologist in the 2 main hospitals where I live. Each hospital system is networked and the new 2nd opinion doctor in both networks ALWAYS defers to the top dog in their network to not make waves. It is infuriating. I may go to Cleveland Clinic just to have recent tests run that will be covered by my insurance and then bring those results to the integrative doctor. I will certainly be given additional testing, but at least I might save some money.
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I got my help from Integrative doctors and only Integrative doctors, who were willing to think out of the box and find the cause of my neuropathy, and they did. Neurologists were totally useless and labeled me idiopathic and were not willing to find out what caused it.
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Old 05-09-2018, 07:37 PM #9
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Thanks. I've been torn lately between trying Cleveland Clinic's neuro-muscular dept and an integrative doctor. I keep getting bounced around because I've seen the top neurologist in the 2 main hospitals where I live. Each hospital system is networked and the new 2nd opinion doctor in both networks ALWAYS defers to the top dog in their network to not make waves. It is infuriating. I may go to Cleveland Clinic just to have recent tests run that will be covered by my insurance and then bring those results to the integrative doctor. I will certainly be given additional testing, but at least I might save some money.
My Integrative doctor sends me to LabCorp for running standard tests, which are covered by insurance. He found out what was wrong with me, when NO OTHER doctor did this. I saw 5 different neurologists and a few different PCPs. None of them had a clue and were not very interested in figuring it out. Now I have two Integrative doctors that I see. One specializes in mold illness and was trained by Ritchie Shoemaker, who wrote the book Surviving Mold. I found her after my original mold doctor figured out what was wrong. I couldn't be happier. I cannot imaging going through life not knowing what was wrong and how to fix it.

If you see an Integrative doctor, ask them to test you for mold. Regular doctors don't believe in it, which is criminal and a terrible shame.
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Old 06-01-2018, 01:11 AM #10
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My Integrative doctor sends me to LabCorp for running standard tests, which are covered by insurance. He found out what was wrong with me, when NO OTHER doctor did this. I saw 5 different neurologists and a few different PCPs. None of them had a clue and were not very interested in figuring it out. Now I have two Integrative doctors that I see. One specializes in mold illness and was trained by Ritchie Shoemaker, who wrote the book Surviving Mold. I found her after my original mold doctor figured out what was wrong. I couldn't be happier. I cannot imaging going through life not knowing what was wrong and how to fix it.

If you see an Integrative doctor, ask them to test you for mold. Regular doctors don't believe in it, which is criminal and a terrible shame.
Is mold the cause of your peripheral neuropathy?
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