[dac122]

Thanks to all for making a great site and continuing to give me ideas and hope.

These days I am holding my own on 1800 mg/day Gabapentin, but I AM NOT DONE LOOKING FOR ANSWERS! Sorry for the yelling, but I feel better now.

Idiopathic Neuropathy or erythromelalgia are probably the closest diagnoses. After many visits to my doctor, 2 Podiatrist, 1 Neurologist, 2 Orthopedic Surgeon, and more tests and trials of things, it seems I have tapped out my local area specialists. In a recent visit to my doctor I asked what would be the best place to go that specializes in these types of problems.

He said Boston General or Cleveland Clinic. As it turns out either place is out of state, equidistant and about 6 hours.

So given my quick history below which place would you go to?

Quick History: I am now 45 and used to run. Not a marathon runner type, just a few miles a few times per week. In August 2006 I did a few runs that left me in pain so I stopped for a week or so. My final run left me in pain and never subsided. My symptoms were burning, redness, random stinging and general aching. The redness has largely subsided since being on Gabapentin, but the rest persists.

[glenntaj]

--Massachusetts general, which has a neurology department well-know for specializing in neuropathy.

Depending on where you are, going to Chicago to the Jack Miller Center or coming to New York to the Cornell-Weill Center for Peripheral Neuropathy would also be options.

Farther south, there's Jacksonville Shands in Florida, and out west the University of California Medical Center in San Francisco. In St. Louis, there's the Washington University Neuromuscular Center.

These are probably, overall, the best in the US for non-central nervous system neurological problems.

[dac122]

Originally Posted by glenntaj

--Massachusetts general, which has a neurology department well-know for specializing in neuropathy.

Depending on where you are, going to Chicago to the Jack Miller Center or coming to New York to the Cornell-Weill Center for Peripheral Neuropathy would also be options.

Farther south, there's Jacksonville Shands in Florida, and out west the University of California Medical Center in San Francisco. In St. Louis, there's the Washington University Neuromuscular Center.

These are probably, overall, the best in the US for non-central nervous system neurological problems.

Thanks. After some research I was beginning to prefer Mass (Boston) General. Thanks for the other recommendations. As it turns out I am in central New York, so it is good to know there may be a place in state in case my insurance has a preference.

[dac122]

After some time browsing Mass. Generals website it does not seem obvious to me what department I call?

Anyone have any ideas?

[Stillfighting]

Did I hear this correctly. Is there neuropathy specialists in cornell. do you mean ithaca, Cornel university?

[ginnie]

Also in Fla. There is Mayo clinic. This insituation is know for their dianostic abilities. It is known world wide. This is where I went, only I went to the one in MN, being at the time from the Chicago area. I wish you all the best. ginnie

[glenntaj]

--but the medical school/facilities on the East Side of Manahattan.

Cornell-Weill has a partnership with the Columbia-Presbyterian system in NYC.

According to Mass General's website, the sub department of neuromuscular disorders in the neurology department can be reached at 617-643-2085; see:

http://www.massgeneral.org/neurology...s.aspx?id=1374

[daniella]

I have been to Cleveland Clinic in OH for care. Not with the neurologist but 2 anestesologist pain doctors and the pain day program well for a few days of it. I have mixed feelings about CC and overall was not happy with my care. I know someone not with PN but RSD who was. I think it is less the hospital and more the doctor you get. Not to say I would go to a bad place but overall.
An option you may want to ask about is sending your records for them to review before you fly out to see if they feel they can help you. I did that with Mayo. I have traveled a lot for specialists and have been let down.
In terms of who to see I would call the department such as neurology and explain a little about yourself and they can maybe refer you to whom works with this more then others.
Where do you live? I ask because my best doctor actually came from my hometown evern better then at Cleveland Clinic or UCLA etc. I had heard on here about teaching and university hospitals so I found one in my area. I did not want to see a student though. Anyhow I called the area I was looking at which was pain clinic/anestesologist and explained my condition etc and they set me up with the director who dealt a lot with the condition. You may want to look into that too.

[ginnie]

How did you like Mayo clinic? I am curious. My diagnosis came from there for my condition.
I also like the idea of a teaching institute. Columbia University Medical Center is where Mayo clinic sent me for a trial study. That place was really good to me. You do see students, but the head doctor is usually with them. They work as a unit for the patient, sometimes as a whole group of physicians. Just a thought for those looking for diagnosis. ginnie

[dac122]

Originally Posted by daniella

An option you may want to ask about is sending your records for them to review before you fly out to see if they feel they can help you. I did that with Mayo. I have traveled a lot for specialists and have been let down.
In terms of who to see I would call the department such as neurology and explain a little about yourself and they can maybe refer you to whom works with this more then others.
Where do you live?

That's a great idea to ask if they could review my history. I live in the central New York region where we seem to have a pretty good medical ecosystem, but not for my problems.