Too Many Peripheral Neuropathy Patients Get High-Cost, Low-Yield Tests
 

The GTT is only high yield when doctors interpret it correctly.

Most ignore pre-diabetic levels, and lows in the long form, which indicate insulin resistance.

Not all PN is diabetic. Some is metabolic --thyroid, and some toxic.
I don't see toxic PN showing up on MRIs.... only spinal compressions. What kind of MRIs are these people getting?

And no mention of autoimmune at all?

Yeah, it's a pretty simplistic, oversimplified article. The ignorance is everywhere from the doctors to the reporters.

P.S. How much does a B12 test cost!?

"'Bout a hundred dollars." - Rainman :p

http://www.healthtestingcenters.com/vitamin-b12.aspx

Doc

Yes, these are the kind of articles--
 

--that annoy the living c%$p out of me. (And the dead c%$p, too.)

Fact is, MRI's are only going to be useful with very specific types of neuropathy--compressive ones, usually radiculopathies of the spinal nerve roots--anyway. While these are common, especially as people suffer the arthritic changes of age, they are only one broad area of neural symptom causes.

There are hundreds of KNOWN causes of neuropathy, and likely a great many unknown ones (toxic, genetic, iatrogenic). The easy things to check for are diabetic/glucose intolerance, vitamin deficiency, collagen-connective tissue--vascular (anti-nuclear antibody) autoimmunites. But how many doctors know about deficiencies beyond B12 (if they even know that)? How many know about NON-ANA autoimmunites, such as gluten, monoclonal antibodies, antibodies specific to components of peripheral nerve, sarcoid? How many take a history of possible work or drug toxicities? (At least most seem to know that many chemotherapeutic agents are neurotoxic.) How many look well for infectious agents, such as West Nile, cytomegalovirus, Lyme?

It is true that the work-up for neuropathy isn't standardized--UNLESS one is at a specialty center. At places like Washington University St. Louis, Jacksonville Shands, Cornell Weill, Jack Miller in Chicago, University of California San Francisco, Massachusetts General, and Johns Hopkins, the protocols are very similar, with variations made depending on symptom location and presentation. But all use a close analogue of the Latov/Quest serological protocol:

http://www.questdiagnostics.com/hcp/...eralNeurop.htm

and the Poncelet algorithms:

http://www.aafp.org/afp/1998/0215/p755.html


The fact that neuropathy causes are so varied and often hard to diagnose--at least a quarter of cases, even with these tests, remain stubbornly "idiopathic"--makes me think that a little more continuing education is in order.

My first neuro did send me right away for a brain scan, but that was to rule out MS which runs in my family. MRI's of my spine were on record as I had had back surgery 9 years earlier for sciatica due to two ruptured discs, and consequent arthritis of the spine which only flares up rarely.
Johns Hopkins re-did all the usual bloodwork including one of the Athena genetic tests for HNPP as I do have pinched nerves, and a two hour gtt. Blood tests showed nothing, but I was offered further Athena testing to try and determine which variant of CMT 2 it might be, as well as a spinal tap. I had a lengthy EMG /NCS and a skin biopsy at Hopkins as well. I refused further testing as it was likely to be unproductive, the neurologist there agreed with my decision. My condition is moderate to severe now, and slowly deteriorating, but there is no treatment, regardless of the findings.
I think that many people want as many tests as possible and find it difficult to be at peace with the idea that there is no treatment. I am not speaking of the many neuropathies that can be improved through lifestyle choices, but of those that are hereditary, which includes many described as idiopathic. The quest for a diagnosis can come to resemble the quest for the holy grail. Modern medicine has encouraged us all to believe that they always have an answer.

I had Dx idiopathic neuropathy and expensive, useless tests and seem to have figured out much of the cause myself. I get outraged as well when I see the suffering people experience with PN, and I always wonder if some could be helped if Drs just took the time to really explore what was going on instead of ordering a test to rule out common disorders and then slapping on the idiopathic label.

Judi

I went to one of the above named universities during the first year of my condition. At that time my entire body was still somewhat affected and I was 100% bed-bound. After spending 1 1/2 hours with a student doctor, the Neurologist that I was told I was going to be seeing came in, spent 5 minutes with me and told me to "get elbow pads, there was nothing I can do for you". I came away from there beyond low. Luckily we had double-booked two different university appointments and two months later went to the neurologist that I am now seeing. He diagnosed me in 5 minutes and said he did his training at that other university and that they were "a bunch of pompous a55h0$75". It was very validating. He stated that they only like to work with cookie-cutter cases. Mine obviously was not and they had to make me the problem, not make it something they couldn't handle. UGHH right!?

There are millions of people in America alone with PN, but doctors (thousands?) who keep prescribing drugs or statins which cause it. On top of that you have widespread blissful ignorance about B12 deficiency, including those fools on The Doctors. Count yourself lucky then if you can find a doctor who orders any kind of test related to PN. So glad to be living in the internet era; I'd know nothing without it. I wouldn't even know which books to look for at a library. (There aren't many books on PN, anyway.) I hope MrsD can write a book on it... like that person at stopthethyroidmadness did b/c of so many doctors' miserable failures.

I am hoping my posts on the subforum, bring in new readers.

I choose titles that are common in keyword searches. DocJohn mentioned this trick back in the early days, and I certainly did not miss its importance.

You know my magnesium thread has 54,290 views. Now some of them are net bots...but it is right up there with others I just found and posted below. I think many people type "Magnesium information" into Google and end up here. For a supplement...that is alot of views!

Years ago at Braintalk, I had a similar thread, and I used to find it linked to on other forums sometimes! Dr Amen had an ADHD forum and I used to read all the glowing comments about my thread back then, from their members (I remember this one best)! The magnesium thread here is one of the first I made when we moved to DocJohn's gracious new forum for BT refugees, now called NeuroTalk!

*Looking around:
There is a game post #5 here with 43,000 + views:
http://neurotalk.psychcentral.com/thread126021.html
and higher ones:
This RSD sticky is higher:
http://neurotalk.psychcentral.com/thread16167.html
and this LDN info #2 sticky thread is higher:
http://neurotalk.psychcentral.com/thread71392.html

This one on PN illustrates how effective Google is:
http://neurotalk.psychcentral.com/thread71392.html
it is 71,000+ now.