[Balanchine]

Hi folks - wondering about who the best specialists are in this country when it comes to PN. My own neurologist, whom I like and respect, has told me that he has no treatment suggestions for my idiopathic PN (i.e. no underlying disease, no auto-immune, no diabetes, no carpal tunnel, no vitamin deficiency, etc., etc.... at least according to all my tests).

This seems to be the concensus as far as I can read online. So I'm thinking about looking to other docs who may specialize in this condition, wherever they may practice, and getting in touch. I'd welcome any suggestions.

Thanks.
Balanchine

[Susanne C.]

Originally Posted by Balanchine

Hi folks - wondering about who the best specialists are in this country when it comes to PN. My own neurologist, whom I like and respect, has told me that he has no treatment suggestions for my idiopathic PN (i.e. no underlying disease, no auto-immune, no diabetes, no carpal tunnel, no vitamin deficiency, etc., etc.... at least according to all my tests).

This seems to be the concensus as far as I can read online. So I'm thinking about looking to other docs who may specialize in this condition, wherever they may practice, and getting in touch. I'd welcome any suggestions.

Thanks.
Balanchine

I see that you are in California. Johns Hopkins on the east coast, in Baltimore, is considered top-notch as are a few others- just a warning though. Your doctor's diagnosis may still stand even after being seen by the very best in the field. Many neuropathies, like hereditary ones, do not have any treatment at all. It is worth checking to see if your doctor overlooked something, but often they haven't. We are not used to hearing in this day of medical miracles that there is nothing to do, but it does happen.

[Dr. Smith]

Originally Posted by Balanchine

My own neurologist, whom I like and respect, has told me that he has no treatment suggestions for my idiopathic PN

I was told virtually the same thing by my neuro—the top PN guy at a major medical center.

Is your neuro willing to work with you? (Mine wasn't, but my PCP is.)

Like many others here, I've been left with doing my own research and figuring this cussed thing out myself. You might visit http://www.lizajane.org/, download some charts, and have a discussion with your neuro about helping you work through them.

I don't want to dissuade you. I'm just a little(?) frustrated myself.

Doc

[Balanchine]

Thank you both for the quick response. In fact I don't have any illusions about this condition and have no reason to think that my neurologist missed anything. He's a bright guy.

The rheumotologist I've seen for my Raynaud's suggested that I look around for specialists in the event that there might be a clinical trial I could get myself into. So I figured I'd put the question to this group.

It's true, we're used to hearing answers from our doctors and it can be very frustrating when there are none. Oh well.

[Kitt]

Originally Posted by Balanchine

Thank you both for the quick response. In fact I don't have any illusions about this condition and have no reason to think that my neurologist missed anything. He's a bright guy.

The rheumotologist I've seen for my Raynaud's suggested that I look around for specialists in the event that there might be a clinical trial I could get myself into. So I figured I'd put the question to this group.

It's true, we're used to hearing answers from our doctors and it can be very frustrating when there are none. Oh well.

You have probably seen this site. There are many. There could be an underlying cause for it. And whether it is primary or secondary.

http://www.mayoclinic.com/health/ray...SECTION=causes

[Dr. Smith]

Originally Posted by Balanchine

Thank you both for the quick response. In fact I don't have any illusions about this condition and have no reason to think that my neurologist missed anything. He's a bright guy.

I'm beginning to think that it's not a matter of missing anything, but PN specialists have a pretty good idea of which kinds of PN they should look for, either because they're treatable or because they could mean something much worse. Anything outside those pretty much fall into the category of "untreatable" as far as medicine knows today, so they don't look any further. I think they'd really rather be able to treat us rather than cutting us loose and wishing us well.

I know that my neuro, because he is affiliated with the hospital he is, takes a more conservative view than others might. He pretty much dismissed the idea of R-Lipoic Acid (which has helped me tremendously). So some of the other major centers may be more thorough and willing to do more testing, etc., though I'm not sure if/how much good that might/might not do.

I think the best I was able to do for myself was learn stuff here and elsewhere on the web, and try some things for myself. If it can't hurt to try it, then it can't hurt to try it.

Doc

[Balanchine]

Originally Posted by Dr. Smith

I think the best I was able to do for myself was learn stuff here and elsewhere on the web, and try some things for myself. If it can't hurt to try it, then it can't hurt to try it.

Doc

DS, I couldn't agree more. To that end I've begun large doses of B-12, a separate B complex, D3, L-Carnitine and, when it arrives in the mail shortly I hope, Alpha Lipoic Acid. And I began a course of acupuncture last week fwiw. I'll duly report any changes to the group!

Thanks again for your input.

And Kitt, thanks too for yours. At this point I've read quite a bit about underlying causes but always am open to educating myself more.

[Dr. Smith]

Originally Posted by Balanchine

And I began a course of acupuncture last week fwiw. I'll duly report any changes to the group!

Please do. I'm interested in whether acupuncture can produce any lasting effects (and what kind of effects) or just temporary—within a few days of the last treatment.

Doc

[superstar]

Originally Posted by Dr. Smith

I'm beginning to think that it's not a matter of missing anything, but PN specialists have a pretty good idea of which kinds of PN they should look for, either because they're treatable or because they could mean something much worse. Anything outside those pretty much fall into the category of "untreatable" as far as medicine knows today, so they don't look any further. I think they'd really rather be able to treat us rather than cutting us loose and wishing us well.

I know that my neuro, because he is affiliated with the hospital he is, takes a more conservative view than others might. He pretty much dismissed the idea of R-Lipoic Acid (which has helped me tremendously). So some of the other major centers may be more thorough and willing to do more testing, etc., though I'm not sure if/how much good that might/might not do.

I think the best I was able to do for myself was learn stuff here and elsewhere on the web, and try some things for myself. If it can't hurt to try it, then it can't hurt to try it.

Doc

Hi Dr. Smith,

How much of the R Lipoic Acid do you take to get that improvement?

I am taking it but have felt no different with any of the supplements including Benfotiamine which I have recently increased to 2 x 150mg.

[Dr. Smith]

Originally Posted by superstar

Hi Dr. Smith,

How much of the R Lipoic Acid do you take to get that improvement?

I am taking it but have felt no different with any of the supplements including Benfotiamine which I have recently increased to 2 x 150mg.

Hi Superstar,

I take 100 mg of stabilized RLA/day—early morning. I got results within 48 hours, but I'm extremely unusual in this—some/most(?) people may need 30-60 days.

I tried increasing to 200 mg/day (split into morning & evening) but saw no additional improvement after 30 days, so I cut it back down again.

I can still get occasional burning if I "cheat" and eat something I shouldn't (sugar/bad carbs, spicy) or overdo physical activities (e.g.walking too much) but those are my fault, and temporary. I liken them to a "hangover" (I don't drink anymore). I pay the piper for an evening of epicurean bliss.

If I stop taking the RLA, the burning returns within 3-5 days, but stops again within a couple more days when I resume the RLA.

I haven't tried benfotiamine yet—probably should.

Hope this helps,

Doc