Thanks for all the quick replies
 

Ya'll make me feel guilty for my slow responses. I'll try to be better, but with three young kids it's tough to get much free time in front of the computer. There's a lot of info to digest just in this thread alone, much less for PN in general. I'm not complaining though, the more I can find out about my wife's PN the better. I haven't followed all the links posted in this thread yet, but I will.

The specialist I'm going to call is Dr. Pariwat Thaisetthawatkul. According to the websites below he "spent a year and a half at the Mayo Clinic, Rochester for a fellowship in peripheral nerve disease" and he is "is seeing patients mainly with neuromuscular, peripheral nerve and autonomic problems."
http://app1.unmc.edu/publicaffairs/t...cfm?match=1680
http://www.unmc.edu/dept/neurologica...ID=2&CONREF=19

Omaha NE is the closest metro area to us. This is the only doc I could find that sounded like a PN specialist, but if anyone knows of any other PN docs in NE I'm all ears.

Thanks again to all who've replied.

PS. dahlek, I couldn't agree more, my wife is super lucky! :) Now if I could only get her to see that... :D

Two of the URLs don't work
 

These two URLs don't work. It looks like part of the address has been replaced with ellipses. If you still have these URLs would you mind reposting? The other two working URLs had good info in them.

TIA,
Jim

More info than you probably wanted...
 

I haven't read all the info in the pages from your URL yet, but I will.

As far as your questions, I think all the answers are in the two files at the URLs below. Heather had ICP (Intrahepatic cholestasis of pregnancy) for one (possible two) of our babies and is currently fighting some bad sinuses, but other than that no major health issues. The PN started shortly after the birth of our second baby. No meds when the PN started.

She's had the glucose and bloodwork. Other than her triglycerides, pretty much everything else came back normal. As far as antibody tests, I don't think so. I didn't find anything in our lab results that seemed to fit in LizaJane's "Neuronal Antibody Tests" sheet. No spinal tap or more invasive tests. It sounds to me like she has small fiber sensory neuropathy, but we haven't done a skin biopsy yet to confirm that. Do you think the "Neuronal Antibody Tests" should be done instead of or in addition to a skin biopsy?

http://www.lizajane.org/PN/Users/jim...rsLizaJane.pdf
http://www.lizajane.org/PN/Users/jim...lthHistory.pdf

We live in northeast Nebraska. Omaha is the only metro area nearby, so I doubt we have too many choices. We've talked to the Omaha doc's people and they seem nice. We're going to try that route. We're not expecting miracles, just someone who won't give up on finding a cause so easily. I realize that's not always possible, but we're not ready to give up yet.

Thanks so much dahlek (and everyone who's taking the time to help) for all the advice. I'm sorry that so many of you have been forced into becoming experts with PN, but it sure helps us newbies out.

OK--
 

--as regards those URL's--let's try

http://www.dcmsonline.org/jax-medici...uropathies.htm

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

The eliipses are only appearing in the final post--in the edit mode the url's appear in full.

I just clicked onthem and got to the papers.

One thing that did occur to me--and sorry if this has been mentioned before--has here been any testing for celiac/gluten sensitivity, which is known to have neurological effects such as (especailly) small-fiber neuropathy?

Yes
 

All of the tests for sensory neuropathy should be done, regardless of what her skin biopsy shows.

It used to be that doctors didn't have the skin biopsy test (It's recent, within the last few years), and the diagnosis of small fiber neuropathy was based on the patients symptoms and history. Now that the test is available, it's terrific, because it puts a stamp of approval on the "clinical" diagnosis. But it's a random biopsy, and might not pick up the damage. In that way, it's a two-edged sword--it's not likely to get a false-positive; but it's quite likely to get a false-negative. It's not really good for "screening".

So, whether it's positive or negative, one has to look for the CAUSE of the nerve damage. Because you want to be able to know what to expect, and how you can stop the process, if you can.

The blood tests are no big deal, really. They can be done at one visit to the lab or doctor. Athena runs them all. When I completed my own panel, I printed out a requisition from Athena's website and checked off everything I wanted and brought it to the doctor! Yes, that's a bit ballsy, but everyone's experience here, pretty much, is that the doctors appreciate having their work made easier, and they all love the spreadsheets.

I think a lot of people here have noted that symptoms of neuropathy get worse when they're ill, like with a sinus infection. Being the queen of sinus infections, I can unfortunately attest to this; though, on the bright side, the increase is always temporary.

Pregnancy, huh? How was her thyroid? Women can become hypothyroid durin pregnancy and that is associatd with neuropathy. TSH, Free T3, Free T4. Were those done? Gluten? has she had the antibody tests or HLA tests? B12?

If I were you I'd download the spreadsheets on neuropathy and just remove from your own list the tests for motor neuropathy, and bring it to your doc. I'd also take the Athena slips:

http://www.athenadiagnostics.com/req...sReq_blank.pdf

If this link doesn't work for you, create an accountt and you'll get be able to get there.

You want tests:275, 263, 369,234, 392,243, 235.

There may be some overlap between these panels; I haven't made a list that I could read as writing, but you'll get the idea.

The rheumatological tests would be from a standard lab.

If all is negative, I think a consensus is emerging for the spinal tap, because that's the only way to diagnose CIDP, and it's become clear in the past few years that CIDP can be sensory.

Glenn----time for you to chime in and see what you think---Does this sound right to you?

Also, I want to emphasize the importance of the lizajane sheets and keeping them up-to-date. Doctors cannot easily access test results done by other doctors, and along the route from first symptoms to diagnosis and aging, it's becomee more and mor important for patients to keep their own charts. I have a looseleaf. YOu don't have to do it online; you can fill in the charts in pencil or pen, if that's easier. But here's what mine looks like after a decade:

http://www.lizajane.org/PN/Users/liz...e%209,2007.xls

It's about 8 pages now, but all docs have appreciated it. And it's online, so if you're in hospital or in a doctor's office without it, it can be accessed on the spot.

Thanks, those URLs work now. Yes, she's been tested for celiac/gluten sensitivity, came back negative.

First off, thanks for all of the GREAT info. We'll definitely push for more tests now. Below are my answers to your questions.

I never heard anything regarding thyroid during any of her pregnancies. Is that something that's routinely tested during pregnancy?

As far as thyroid testing, I'm not sure. We've already got quite a few lab results back, but I can't always match what I see in the lab result with what's on your most excellent spreadsheet. For example, your spreadsheet has spots for "TSH" and "Free T4 & T3" values. These acronyms aren't on her lab results, but she does have about several lines of thyroid results like this:
INTACT PTH IN RELATION TO CALCIUM
normal parathyroid function 10-65 NORMAL
hypoparathyroidism 65 HIGH
secondary hyperparathyroidism >65 NORMAL OR LOW
nonparathyroid hypercalcemia

I'm pretty much in agreement.
 

Actually, possibly due to Dr. Latov's association with Quest (he's written a number of clinical application papers with their testing experts), all of those tests mentioned from Athena are now also available through Quest, and also through a lot of other testing corporations.

The trick is getting doctors to consider them--or even know abou them. I know the first few neuros I went to did know enough to order things like a B12 level, though not homocysteine and MMA. And one ordered a protein immunofixation instead of the far more sensitive immunofixation electrophoresis (to look for rogue antibodies or M-proteins associated with neuropathy).

This is why generally the patient, using tools such as these papers and the spreadsheets, should try to drive the protocol, especially if the "usual" testing (like glucose levels) shows nothing much.

Be wary, too, of doctors dismissing obviously out of range tests that may have some significance. For instance, high triglycerides have been associated with some cases of sensory small-fiber neuropathy through the connectin with metabolic syndrome. And, isolated anti-gliadin IgG levels, dismissed by a lot of docs as too inspecific for celiac, do seem to show up in a lot of people with neuropathic symptoms due to gluten sensitivity (and would be a good indication to go on a gluten-free diet).

HI JimJ! I'm from Nebraska too.....I'm from Lincoln but live in Houston, TX now.
I have Chronic Axonal Neuropathy but didn't get it diagnosed till I had a Nerve/Muscle biopsy. I had ALL the other tests that came back just fine. I hope your wife gets a diagnosis and gets on proper meds. My Neuropathy is in my arms, legs and scalp....of all things! PN is such a rotten thing to have to deal with!
You came to the right place though for info and suggestions. Everyone on this site is SO compassionate and caring.
Good luck to you and your wife!

At first my test showed very little and I was in bed like 23 hours a day and crying through vicadin. I did go for many opinions and was upfront with my docs about it. I drove too and have seen people in MI where I'm from OH,CA,and I think now will be in FL. When I had some tests repeated they did show some issues and also I had an ssep which I was told is used when the emg doesn't show as much as the pain one is in. I'm new here too somewhat so I'm no expert. What I do know and its very hard not to give up and without my mom I would of cause so many docs are YUCK! There are some good though I think. THis forum though is GREAT! Hang in there.