Neuropathy doctor recommendations?
 

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.

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

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.

Raynaud's
 

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

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

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.

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

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. :Starvin: :Popcorn: :pizza: :Dancing-Chilli: :icecream:

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

Copy that. ATM all I have to show for it is a series of circular red bruises across my back from where the acupuncturuist subjected me to the dreaded cupping!

Oh and I'm not pushing anything and have no agenda, but have just acquired a book called, wouldn't you know, "Peripheral Neuropathy" by Dr. Norman Latov. I'd read good things about it, expect some or many here have read it. The writer is a neurologist and researcher in NYC. Since I'm going to be visiting there over Thanksgiving I'm toying with the idea of trying to get an appointment with him. Anyone have any personal experience?

Thanks, all.

Yes, he has the most complete testing routine and is an expert.

I have that book too, but it has two glaring typos in it on separate areas of the book where he recommends 500MG of B12.
Like most doctors he doesn't know much about nutrients, and tends gloss over their importance.

Glenn posts about him now and then. Seems Dr. Latov is really interested mostly in IVIG studies, and may be unavailable to you. There are others in his group however.

Here is his routine for testing for PN:
http://www.questdiagnostics.com/test...ripheralNeurop

Trained by Dr. Latov is Dr. Chin, who has also been mentioned on this forum. You can search here to find him.

http://www.neuropathy.org/site/Messa...0&dlv_id=11441

It is important to screen for the autoimmune antibodies...because IVIG is really the only treatment that may reverse this type. Most of the treatments so far are only symptomatic in nature.

The supplement route, is often ignored by most of the neurologists. Although some people now come here saying their doctor has suggested lipoic acid and/or carnitine. Sometimes Metanx (which is RX version of 3 OTC vitamins activated, methylcobalamin, methylfolate, activated B6 called P5P).

Dr. Latov does test for vitamins in serum, but does not use to the best of my knowledge intracellular testing, which is more accurate. He only has suggested vitamins when serum testing is low. One poster here showed up low in B6 for example. Magnesium testing is not really accurate in the midranges, and often is not suggested by doctors, when in fact it can be dramatically helpful.

Hi Balanchine,
I saw Dr. Latov who diagnosed me with small fiber neuropathy via a skin biopsy. He ordered comprehensive blood tests, EMG and then the skin biopsy. My neuropathy remains idiopathic so there was no treatment offered. I have learned so much more from these message boards and am currently trying the supplements offered here.

That's a sobering bit of info there, NYCG. I thank you for posting it... really gets me thinking. After MrsD's always-inciteful post (thanks, MD) I'd looked into Dr. Chin and was contemplating calling his office to try and get in during my NY visit. Now I'm not so sure. I certainly accept that like you my PN is idiopathic and that the medicos are, shall we say, light on effective treatment.

I'll still poke around at clinical trial possibilities and continue with my vitamins/supplements/acupuncture routine for now.

You know you could look for an integrative doctor like Sally uses.

They do use nutrients/supplements quite a bit to restore functions, and some other testing. Typical MDs do not...they follow "standard of care" very closely and esp neurologists have very high liability risks, and pay very high premiums. They won't therefore do anything that is not mainstream therapeutically.

The integrative doctor is rather new. I think they are similar to holistic MDs.

I subscribed to a site called "Clinical Connection". So far, i havnt not seen any clinical trial for PN since I joined over a year ago.

One poster here sent me information about the Nav1.7 sodium channel blocking drugs coming up:

example:
http://www.ncbi.nlm.nih.gov/pubmed/19690272

You can search this topic on Google...lots there lately.

Thanks to you both. I have the name of a holistic/integrative doctor here in LA, or more specifically Santa Monica (where one finds such things) and may well give her a shout. It certainly can't hurt, and I appreciate the comments about mainstream therapies and MD risk and so forth.

Looking at that link you sent, MrsD, what sense I could make of the scientific jargon (not a lot), that treatment does sound promising - although it would seem for pain relief. That's not my problem and I feel terrible for those for whom it is. Been down that road for years with cluster headaches.

Thanks again.

Add google to your searches—there are dozens. ;)

clinical trials: peripheral neuropathy

Doc

i've been to both latov & chin.
 

sorry to report that they did not live up to the hype. i did, however, see dr. ahmet hoke @ hopkins (head of PN Dept) who was the most knowledgeable & forthcoming neuro i have seen in 14 years of coping with CIPN.

he spent more than an hour going over my test results. he also performed a punch biopsy & a NCS. here are his recommendations:

1) exercise (weak painful legs? a stationery bike or swimming)
2) reduce high triglycerides (known PN inducers)
3) treat my diabetes with meds since my diet & exercise approach wasn't working
4) if RLA works, keep using it

i cannot recall all his suggestions without digging thru my records but it was a very worthwhile visit. i wish i could see him on an ongoing basis but a trip from nyc is a giant hassle for me.

if you're coming east, i'd go to hopkins. most bang for your buck. oh btw, hoke takes medicare (if you have it). latov does not.

Hmm. Well, things in general seldom live up to hype imho except maybe for Mozart and Bach. Unfortunately the brevity of my trip east will not allow for a jaunt Baltimoreward, though I would have liked it both for your MD rec and the crab cakes. Another time perhaps. Thanks very much for your kind help. And to the good Doctor S as well, per usual!

you're very welcome! when/if u get to baltimore, check out Duda's crabcakes in the Fell's Point area....

LOL! :ROTFLMAO: If I/we ever got to Baltimore, I think we'd be looking more toward the B&O Museum or Camden Yards! :D

Doc

i didn't realize you were heading east with Balanchine!:hug:

I'm lucky if I can find the airport.

Um... we're not (joke/kidding acknowledged :D), and it's not exactly east from here, but it has made 2nd tier on a few short vacation trip lists. :D

Doc

Dr. James Dyck
 

Dr. James Dyck is the top neurpathy doc in the world. He is at Mayo in Minnesota. He & his father (who is in his 90s & STILL researching) have discovered many various forms of neuropathy. He is as good as they come. He is also friendly & easy to talk to. I LOVED him!

Thanks, Kaz. Minnesota's a bit out of my zip code but I would go there if he could help me. I'll read up about him.