Well, she is still doing testing. I have a skin biopsy next week and the autonomic testing the week after that. I'm still taking the multi and the omega and flax. I'm concerned about not taking calcium and vit D, so I ask about that. Maybe she's concerned about toxicity?

My family and friends are all like wow you must be so relieved. They have no idea. I don't know what I'm dealing with yet. I am in pain. Yesterday my inner ankles burned all day, and my forearm, although less so. I am looking at medication for the rest of my life, medicine that probably won't even take the pain away.

I'm a researcher/writer. I've been doing a lot of research and it's just been more upseting. No hope for cure. How bad of a condition do I really have? Real Age.com, Dr. Weil, they say just meds. Even my Nutritional Healing book which has everything, NOTHING for neuropathy. It's like I feel like I'm screwed.

I'm sorry to whine to you all. Really, I am. Thanks for listening. I'm not usually a whiner.

PS Mrs D.
I did not take cipro or that other drug. But I'll double check with my PCP.

I've spent the last 8 months having my ankle imaged, MRI, etc. My tendons are all in tact.

Thanks,
Kris

This is a good thing....that you are a researcher and have experience looking for answers.

Those who do the homework, (the stuff ignored by the doctors) are the ones who often see the most improvements.

There are several parts to PN. Identifying it (typically what the doctors do), and figuring out what is causing it (some doctors will do this), getting symptom relief, and hopefully healing (whether this is IVIG or nutrient support to encourage nerve healing.)

It would be helpful if you can recall what happened immediately before your first symptoms appeared.
Did you have a viral illness? Come back from a trip?
Overdo exercise? Have a vaccine?

And don't forget to request a heavy metal panel.
Arsenic specifically can be in water supplies or inhaled from burning pressure treated wood. A woman in my area got arsenic poisoning from playing softball on a contaminated playground! Lead, mercury, and cadmium are also culprits.
Hobbies and also stripping or refinishing furniture may cause PN.

Thanks, I will try to remember. I was feeling awesome. I was exercising daily but didn't think I was overdoing it. I had started taking daily two mile walks about 7 months before, and about 2 months before had started getting up early to walk or do aerobics. They were light workouts though for the most part. I'll request my records from my PCP. I'll also see about whether they've checked me all out for diabetes.

I'm a little worried about these tests. I'm worried that what they find will be even worse than what I'm now experiencing. I'm turning my cares to God. Little worries keep creeping in. One day at a time, one day at a time, one day at a time....

when I was about 30 yrs old.

It is not a big deal for me now. I have some discomfort mostly at night, but it is very minor compared to what it WAS...which was terrible. Mine was due to hypothyroidism that was not
diagnosed properly. AFter getting thyroid replacement over 15yrs later, my pain was mostly resolved within a year.

I still have some burning occasionally, and arthritis issues, but they are minor now.

There is a thread in the stickies about improvements.
http://neurotalk.psychcentral.com/thread43699.html

The peripheral nervous system does regenerate with time.
With continued damage from continued exposure to the agent causing it--- or failure to treat autoimmune issues, or discovery of a genetic hereditary cause...these are the more negative scenarios.

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

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.