Whine?? WHINE? I don't consider you to be whining at all. Not a bit. And even if you were whining you're entitled. At least for a while and every once in a while thereafter.

I would ask your doc why no supplements, etc. Is there a specific reason? Or just out of touch and date info? Check out the stickies here at the very top of the forum. The very first one, "Neuropathy does improve" has much important info.

I understand exactly how that feels. I still have days where it gets me really down. "I'm going to have this for the rest of my life". A cure? Maybe...again, read the first stickies.

And you found this board. That was the miracle for me! Late one night, or very early morning, again I couldn't sleep for the pain. Sitting at the computer crying trying to find some answers and I stumbled on this message board. It's been a lifesaver, literally. Now my pain is decreased about 90% overall since finding this 'place'.

For pain relief ask about Lyrica...and also Tramadol if the pain is that bad for you. Some people do well with the opiate type pain relievers. They never did much for my PN pain. Pain is very subjective for all of us. You'll discover that most of us take some combination of meds for the pain. I have RLS with PN. I was taking Mirapex until just recently (long story why I took a break from it and related directly to my smoking quit). And my best friend, Tramadol. Tramadol mutes the PN so wonderfully and did work on some of the RLS symptoms as well. Oh! Sorry, RLS = Restless Leg Syndrome. The Mirapex was truly an eye-opener for telling the difference between what was PN pain and what was RLS.

And please don't be ashamed or worried to ask your doctor for adequate pain relief if that's what you need. You have the *right* to adequate pain control. And if that doc won't prescribe it you need to find a doc that's better versed in pain management and not paranoid about actually prescribing the pain killers.

Welcome to the board!

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!!!

and welcome to this forum!

I am sorry you are experiencing pain and also suffering anxiety from dealing with this period of uncertainty.

I, too, think you will find this forum extremely helpful!

I agree with others in thinking you need some of these nutrients and hope your doctor is willing to explain why she wants you to withhold them just now?

I have found that docs telling people to "stay off of the internet" tend to think the person does not know how to discern a good/reliable resource from a not-so-good resource... which is an arrogant attitude, if this is the case!

You are so fortunate you are used to researching information! This will help you tremendously!

I am reasonably intelligent, but I still really find the assistance offered here so very helpful to me when I am trying to understand all of this! Others here are more intelligent than I am about all of this!

A part of my difficulty understanding may be fatigue and pain from increased illness and it also might be partially psychological, as in being tired (frustrated) from being ill!

It's always great to have others to share information with and to engage in mutual support!

Again, welcome! I don't have anything to add, except... keep on asking questions whenever you wish to do so! Someone will try to help you!

Liza Jane's site is back up. www.lizajane.org

Billye

Thanks again everyone. I just got back from a wedding tonight. I have been on my feet all day, literally. I think the neurontin must be doing something.

I have a question. If I'm on my feet a lot, and the "problem" area swells, does that mean I'm doing more damage?

BTW, my doctor advised not to read about RSD so much on the internet. I was very tearful in her office and afraid that that's what I had. There's still some uncertaintly in my mind, and we'll have to wait and see how these tests go. But I just wanted to say that I had myself worked up to a point of crying A LOT, even during the appointment, and I was also QUOTING HER from articles online , regarding needing a nerve block. I think that's why she said what she did about not spending so much time researching RSD online. I know what I said before implied differently.

I don't know if any of you are from Boston, but I'm seeing Dr. Oaklander at Mass General. I was lucky to get an appt. (again, crying to the scheduler), and my next one isn't until 9/17 although they assure me we'll be "in touch" after the testing is done in the next few weeks. The other neurologist I will probably see for a second opinion is Dr. Didier Cros. My foot/ankle ortho really like him and recommended him.

Thanks again. YOu all have been very welcoming and helpful. Good night -- I'm bushed -- and so are my feet!