Tho hypo-thyroid isn't my main issue these days [I've others], I did start to have hypo thyroid issues about at your age +/- a year or four? I was lucky with my GP at the time who did a FULL thyroid panel on me and was quickly put on synthroid...It then took a few years to tinker the dosages to just rite.
But if only the basic thyroid & T-3, T-4 are done, not a whole lot would show up. To make it easiest on yourself? Be sure, if you get the test done, to FAST and have it done early in the morning! Otherwise, like other basic tests, such as simple blood sugar tests, the #'s will be skewed a little to a lot bit.
I'd really hate to have you going from specialist to specialist tho? A really good exam of your ankles does appear to have been done and no visible 'structural damage' seems to be present, Consider that A GOOD thing? Visit this web site [click on the blue part] to learn about what the docs are doing and why: http://www.neuroexam.com/content.php?p=2
Having a CLUE as to what they are doing is half the battle in my book>
I understand the anxiety. I also understand as do all here that the PAIN and fear it all creates is something most folks [unless they experience it] DO NOT GET! It's like cancer? Since I've that too, it's surprising how many cancer folks ask ME about the neuropathy stuff! Mainly because their docs don't do anything other than say 'live with it'. We don't have to. BTW? My cancer came long after my PN!
You are going thru the beginnings, it sounds, of a good diagnostic work up. Don't worry about it all until most stuff is eliminated. The process is one of ELIMINATION.
So hang in there and keep getting those tests done! Knock things off those lists! Have faith, and maybe it IS something simpler than immune issues or those other horrid thoughts you've been having. Save them for later! Work on diagnosis, living right and hugging your kids and your hubby! Every blessing in this world is likely right there to hug! Think positive things for now and get stuff done as best you can! Special thoughts and good ones for now - j

You've gotten a lot of good advice already, and you seem up to the task of taking some control over the future of your diagnostic workup and whatever treatment.

Please make sure you get a complete workup for neuropathy, although, I have to say, THIS DOES NOT SOUND TYPICAL.
It really sounds a bit odd for neuropathy to have it start at an ankle, and sort of settle around it, and then go to the arms.

It could be an inflammatory neuropathy, so you should get your neuro to do a full workup for it.

I've just discovered that lizajane.org is still down (we were having a server problem that I thought was solved), but on that site I've listed all the tests one needs for neuropathy, with a checklist to go through with your doctor.

Have you had your iron levels checked as well as B12 and folate?

Thanks for all your advice.

The ATYPICAL aspect of this has haunted me from day 1 in November 07.

I'm not sure how to get a work up for "Inflammatory PN". Do I just ask for that. And a "autoimmune panel"? Is that all bloodwork or what?

I'll be sending the doctor an email so I want to be as concise and non-idiot sounding as possible.

In the interim, in the next two weeks I"ll have the skin biopsy and the autonomic test (three hours). Monday my PCP is doing a regular fasting bloodwork, and I'm wondering what I can get them to add on to that re: B12, folate, etc.

Thanks,
Kris

It's a week-end and some of our regulars are on a summer sabbatical.

For an autoimmune neuropathy, I'm going to try to give you some of the tests to ask for, but I'm not sure of all of them. I'm just hoping one of the experts will pop in.

This site seems to have the best summary that I can find tonight. http://www.questdiagnostics.com/hcp/...20Neuropathies I'm sorry I can't just list them for you. My eyes are giving out. Can't do much more on the computer tonight. Keep checking www.lizajane.org . It's the best I know of for summarizing these tests in a consise manner. The site seems to be having some problems tonight.

Billye

Billye

but this site could be useful in terms of diagnostic testing - tho not as complete.
http://neuromuscular.wustl.edu/lab/nvworkup.htm#lab
Found another portion of this web site that mite help as well:
http://neuromuscular.wustl.edu/over/labdis.html#Ab
IF you aren't careful you mite just lapse into 'doctor-speak'!
It will at least give you an introduction to all the different kinds of tests done for all the different reasons. - j

Thanks for the links! My neuro will again tell me to "get off the Internet." LOL

Your doctor will tell you to "get off the internet"??

How typical. It' too bad that doctors and patients can't WORK TOGETHER, whether it's using the internet for information gathering, or just to ask questions of the doctor.

I have had only ONE DOCTOR IN MY ENTIRE LIFE tell me to go ON the internet.

It was a dermatologist. I had some lesion on my hand. He takes one look at it and says: "Melody, do you know how to go on the Internet?" I laughed and said 'Are you for real, who doesn't??"

He writes on a piece of paper "Granuloma Annulare". (I'll never forget that name).

He says "sometimes it's called RINGS". This is what you have. I'll freeze it off today, it will scab, and we'll see what happens later on, But go on the internet and you'll see people WITH REALLY BAD CASES OF IT. You'll see how lucky you are".

So he freezes it in one second. I go home, I go on the internet and I saw exactly what GRANULOMA ANNULARE can do to a person's body. I had exactly one round example on my left hand.

After he froze it, I had a shadow of it for one year. Now there is absolutely nothing on my left hand.

Mind boggling.

And what's even more mind boggling, is that my doctor (who is over the age of 50), told me to GO ON THE INTERNET.

You gotta love docs who do this!!!

Thanks to everyone again for your kind replies. I just have a couple of questions.

Liza Jane: you mentioned you think this is an inflammatory PN. What does that mean? How do I get tested for that -- is that part of the autonomic testing or is that bloodwork? My lupus score on my blood work was just above normal so I'm supposed to schedule with a rheumatologist too -- told that will take forever to get an appt.

Mrs. D: Are you a doctor or clinician of some kind? I'm asking purely out of curiosity.

to everyone: Do any of you have color changes to your skin? The top of one of my feet turns red and purply sometimes, and I have bright red patches on the palms of my hands (no pain or numbness there.)

I just bought some of the capcaisen (sp?) topical yesterday and will see how that goes. Autonomic testing is Thursday. PRAYING for a normal result on that. My stool has been lose for a few months (I know, TMI) so I'm praying that's not related.

Thanks again everyone,


Kris

Not many here, myself included, like this burning ointment.

If you have burning, I suggest you try Biofreeze. This is cooling.
I was given this in physical therapy a few years ago..it is a wonderful symptomatic reliever. There are some online sources, which can be much less expensive than buying it locally.
It used to be restricted to chiros and PTs, but it is escaping into the marketplace now.
This is their website:
http://www.biofreeze.com/
I do not buy from them, they are too expensive however.
The Ilex in it is also called Yerba Mate...which is a tea very popular in S.America, more used than coffee, in several countries. It has healing properties and is also an antioxidant.
Even tho it is listed as "inert ingredient" I think it is very active in the beneficial effects of the Biofreeze. Just my opinion.

I don't advertise my profession online due to my liability insurance. Most people figure me out quickly, anyway.
I moved my older avatar to my profile...hint hint.

I'm familiar with yerba mate. A friend of mine from a few years ago drank it. I think I'll get myself some. Do you drink it Mrs. D?

Thanks for the info on biofreeze.

Best,
Kris