new to NP
 

B"H


I have been told I have PN, and my doc is setting up appointment with neurologist. What type of PN is unknown at this time. I have a couple of books ordered to read, and have been reading on the web to better understand what is going on with me. How do you all exercise comfortably? I used to be active and now my feet and legs hamper alot of what I used to enjoy.

Good to meet all of you.

Aiki:)

Hi and welcome,hope you Dr. pick a Neuro that understands,and that
specializes in PN, You could call the neuro and check or bring him or
her up on internet and see if you can find out...I'm really glad you ordering
books,to prepare youself.. Good look again and welcome,this is a very
good group of people. Look under the PN forum and read some of new and
older posts. Hugs to all Sue

questions
 

Hi Aiki,
Welcome to our little family! :) Sorry you have to be here but glad you found us.

Can you tell us what type of symptoms, what tests etc. you have had? We have a lot of very knowledgeable people on this forum. For starters with testing, you might go to this website: www.lizajane.org That list of testing was put together by a lot of people who have been in the same position.

I hope your neuro is well versed in peripheral neuropathy.

Billye

Billye

symptoms and tests
 

Well, it's beginning to look like a lot may be related over the years. As a teenager I began having trigemial neuralgia, in my twenties had pt for over a year cause I couldn't consciously control my feel (up/down/left/right)(and still do exercises or pay dearly), have had thoracic outlet syndrom nerve entrapment/compression, shoulder reduction due to nerve impingement/compression, heaviness in legs, burning in feet, stabbing in outside of thighs and cramping in calves, upper arms have the stabbing/aching, and hands have begun to burn as well. I have ringing in both ears which I have been told is neurological. Tests ruled out MS, Lupus, Tumors a few years ago, and now I have been told it is PN and will be getting appointment with new neurologist this week. I am waiting for the call. I can't sleep with covers on my feet. Neurontin 300 3x a day is taking the edge off the pain now. Does this help?

I did sprint triathlons while I had PN and didn't know it....once I knew I had PN, I figured out why I was hurting so much and every one else was cruising past me like I was standing still....good thing was I was so old I outlived the competition in my age group and usually got a medal....so what if I was 'last woman walking'. I stopped doing them after the diagnosis, and I am not sure that was wise....it was necessary at the time I guess.

Once the race director told me he was tired of keeping the gate open for the old ladies who did the Olympic distance tri (which is twice the distance of the sprint). I told him to shut up...that was me coming in from the sprint tri.:p

How do we exercise with PN...depends on who you are and what you did before you found out you had PN....it is about balance and pacing...and common sense...something I seem to lack.

You will have to find your level of comfort...

I am still working on that...some days it involves just getting my billowing behind out of bed....

other days it is swimming, walking or biking...depends on how I feel.

Lifting weights is usually indicated too, but again...depends on how fit you are now and where you want to go. It's tricky, no doubt.

Hi Aiki, there is a mountain of information about PN on the front page of this forum up top called " Important links & Stickies " that will keep you busy for a while :), anything you don't understand just ask.

Brian :)

Aiki:

Welcome to our little group of funny people. We laugh, tell each other stories and just comiserate.

Some of us have it worse than others, some have it much milder. My husband has it much worse than me. Lately my arthritis is killing me, rather than my Diabetic Neuropathy.

But hey, you don't hit 60 and have ABSOLUTELY NOTHING WRONG WITH YOU. And if you, the you should donate your blood because you are a miracle person.

I'm just happy to get up, hug my husband and go out to Dunkin Donuts for breakfast. That's a good day for me.

So you hang in there.

Melody

In 2000 I was still biking 25/30 miles on the weekends, and playing 10-12 hours of aikido weekly and having fun with tai chi. I still had symptoms then, but much milder and not diagnosed. I keep starting to exercise and over doing it and having to stop and recooperate. I have a Y membership and want to get back in shape as much as I can. I need to keep my weight going down, not up at this point or there will be more payback. I will read the sites and stickies carefully too. Thank you all for the encouragement.