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.