I have small fiber peripheral neuropathy...

Can anyone recommend a good PN specialist in the Portland, OR area?

Seattle, WA is not out of the question.

Thank You,
J

The best way to find good doctors is to go into local pharmacy's and talk to the pharmacist. They know everything about the local doctors, it's amazing. Of course do not try to do this when they are busy, go in when they are slow.

Also for myself I had traveled out of state for a lot of specialists but one of my best doctors I found on my own with some insight from this forum. People here had stated if there was a teaching hospital near that they often are more up to date. Now I did not see a student of course but explained to the department my problem and they refered me to what I was looking for was a pain doctor/anestesolgist who even over Cleveland Clinic for ex was better. So if you have a similar place you may want to call the neuro dept. Good luck as I know how hard it is to find a good doctor

Good morning Daniella and thanks for replying...

In Portland, we have a teaching hospital/university (OHSU - Oregon Health & Science University) like you describe. My testing was done here, as was my follow-up consultation. Nothing other then pain management was ever discussed. Very disappointing and very dispiriting.

Daniella, can you tell me who treated you at the CC? If that's not allowed, perhaps you could send a PM?

Thank You

There must be someone in the NW who has found a good PN specialist?

Anyone?

I had a fine doctor at OHSU (I liked interacting with him, he ordered lots of tests, answered my questions, and paid attention to the research articles I brought in), but he's no longer practicing in this country, let alone the PNW. I'm not real happy with the doctor there that they set me up with (mostly because he doesn't appear to give a hoot) but haven't found an alternative.

However, a year ago I saw Dr Jose Ochoa, who has spent his entire career studying the peripheral nervous system, part of the time as head of the R.S. Dow Neurological Sciences Institute (a research center that's now part of Good Sam). His clinic is called the Oregon Nerve Center. All of the other neurologists I've see list peripheral nerve disease as almost an afterthought to the central nervous system. Looking at Ochoa's CV, that's reversed.

He is entirely focused on diagnosis and doesn't take patients on for long-term treatment. Great for getting a second or third opinion, but not if you're wanting to try out different drug regimens to see what helps the best over time. Even though he's past a regular retirement age, he's in touch with the research that's going on in the field. As follow-on to our discussion, he had some correspondence with a noted Harvard researcher on some of my particulars, and to a former research colleague of his in Barcelona who has a study I could participate in (if I get myself to Europe).

As I researched him, I saw he's not without controversy since he testifies as a hired expert witness in medical cases. But I discussed this with another doctor who told me that once I'm his patient, he can't be hired to argue against me. Having seen him, I'm convinced that he's really interested in finding a diagnosis.

And although he didn't, in fact, find a cause for my PN, I did learn more info through the testing he did and, for me, getting another opinion was valuable.

I don't rule out pain clinics as a source of diagnosis. Reading through some pain clinic web sites, sometimes those clinicians will find problems that other doctors overlook. I've been only to the one at OHSU, though, and I wouldn't recommend them.

Marlin, I can't thank you enough!

I'll be calling them in the morning...

A found a little background info on the Oregon Nerve Center
http://www.oregonnervecenter.com/featured_article.html

Good luck, Joe. One of Ochoa's habits is to take notes verbally, using a small tape-recorder that he flicks on and off. Eventually, he started having me speak into it as I described my history. I mention it because it surprised me and almost threw me off, but it's the way he works.

Thank you, I've got an appointment to see Dr Ochoa early next month. I was told that I should allow for at least 2 hours my first visit.

Marlin, was this your experience as well?

Yes, my first (and only) visit was at least two hours. (As I mentioned, he's focused on diagnosis and there hasn't been a reason for me to return.) He does a detailed case history and physical exam. He was doing some writing and thinking towards the end before we discussed some conclusions. I received a seven page written report from him a week or so later, as well.