[tollyleslie]

i'm posting** prior to entering chat... what i really would like is to talk to someone about neuropathy... my current neurologist believes i have polyneuropathy due to sarcoidosis... i'm losing my arm function and have already lost so much in my legs... i feel alone

[Twinkletoes]

Welcome to NeuroTalk, tollyleslie!!! I hope you'll get the support that you need. There's a great bunch of folks here, but its kinda strange that few use the chat rooms.

[tweetybird41]

Originally Posted by Twinkletoes

Welcome to NeuroTalk, tollyleslie!!! I hope you'll get the support that you need. There's a great bunch of folks here, but its kinda strange that few use the chat rooms.

Hello, my name is Jocelyn and I am new to this site. I have been suffering with Reflex Sympathetic Dystrophy for almost 3 years. I have had 3 back surgeries...after the 1st one, I got a staph infection and had to be reopened to clean it out. Then, on Feb 14, 2008, I had my 3rd surgery, and that is when I ended up with the RSD. I have absolutely no feeling in my left leg, but the pain is so bad on the inside that I have told my husband that I want to cut it off! I am now starting to get the pain in my right foot! The pain medication does not help. A year ago I was taking percocet 10/325, 2 every 4 hours, and when my insurance company stopped paying for it, the dr dropped it down to 5/325, 2 every 4 hours, which is half the dose I was taking. The pain is now much worse now, especially since it has moved to another area, and I have been asking my dr since May to give me a stronger medication, but it seems as if he doesn't hear me. I am 42 yrs old and I feel like I'm 82!! I am on .5 mg of zanax for anxiety (no help), 1200 mg of neurontin 3x's a day, 50mg of amitriptyline at night to help me sleep (which I still don't sleep) and the percocet for pain (which doesn't help)!!!! I am sad & depressed all of the time and sometimes wonder why I'm alive! If I had 1 wish, I would wish for a full 24 hour good day, starting with a good night's sleep! I know that won't happen so all I ask for is to have a decent quality of life! I would appreciate it if someone had a suggestion on how to make my dr understand that I need stronger pain medication to give me that best quality of life!! Thankyou, Jocelyn

[tamiloo]

Just wanted to add my welcome and let you know that you are never alone here on Neuro Talk....

Feel free to drop in anywhere and add your thoughts or questions...take care and hope to see you around...

[clarkstar]

Hi tollyleslie! i am new here also and as you can see it is a very welcoming community. someone with some good info always shows up to guide you and help get through these awful problems! I wish you the best and hope you ca get some fucntion back in your legs. i am dealing with right sided neuropathy myself, along with both feet. i can imagine how bad if i ahd it in both legs :/

[SuzanneWhite]

Originally Posted by clarkstar

Hi tollyleslie! i am new here also and as you can see it is a very welcoming community. someone with some good info always shows up to guide you and help get through these awful problems! I wish you the best and hope you ca get some fucntion back in your legs. i am dealing with right sided neuropathy myself, along with both feet. i can imagine how bad if i ahd it in both legs :/

Hello All, I suffer from post chemo neuropathy and wonder if others who have this condition feel more pain at night than during the day. Also, what supplements do you take to try and alleviate the condition? Thank you, Suzanne White

[Abbie]

Hello Tollyleslie and WELCOME to Neurotalk!

I don't know much about Polyneuropathy but from what I have read it says it's a simultaneous malfunction of the Peripheral Nerves throughout the body.

Here is a link to our Peripheral Neuropathy Forum:
http://neurotalk.psychcentral.com/forum20.html

Please feel free to roam around and join in anywhere!

I hope to see you around the boards.

Abbie

[dahlek]

Found here: http://neurotalk.psychcentral.com/forum44.html

See where you 'fit'?
Check out the 'stickies' at the top of each forum where there is a heap of info to start from...then ask your questions....
Both sites can help you to cope with the pain and numbness and other 'things' that come with the territory.
I've an auto-immune neuropathy. Along with other immune issues, and I understand that we don't always 'fit' into a simple box.
Just at this point? Don't Panic! LEARN! Folks here are kind good and understand many sorts of pains.
Don't be afriad to ask questions? But first read up on past questions asked... it mite have been asked already.. LEARN and read and then? Don't be shy.
's - j

[Darlene]

Hello and welcome to NeuroTalk. Happy to see you have come to be with us. Just let us know if we can be of any help.

There are great number of fellow members here to assist as possible. My thoughts and prayers are with you.

Again welcome, looking forward to seeing you around.

Darlene