petitep

Welcome! + Introduce Yourself!

Posted on 04/01/08, 01:57 pm

Hello All!

Welcome to the group, I hope you find this area to be a helpful resource for Neuropathy, you'll note that there is a topics that is a good starting point.Please ADD your resources to these pages if you find something helpful!

"What IS Neuropathy"
"Nerve Damage Resources and Links"
"Pain Management Resources and Links"

In the photo section you will note that there are MANY images about neuropathy to help explain the different types and supporting links behind where we found the information.

Also the Medical News and Milestones topic will feature any information that will I'm sure be an ongoing Medical News and topics of interest. As new breaking news information is heard of, please post to help everybody hear of the same.

Please ADD to the posts, image list, links and news topics, looking forward to you joining in and participation!

Feel free to post below and introduce yourself!
Welcome!
:)

• Reply #1 04/01/08  2:09pm
  
  petitep
  Hello... I'm Petitep,
  
  I'm glad you found our site there are many welcoming members!
  
  Here is my quick bio... I have small fiber neuropathy effecting the autonomic nervous system... It has progressed from my feet, legs, hands, top of feet, ankles, and top of hands most recently... To name the top few, I have autonomic problems, autonomic dysautonomia, neuropathy, PFO closed, migraines that mimic stroke and stroke history.
  
  I'm determined to be an active participant in getting the word out about helping others in this fight against all types of neuropathy, autonomic and stroke related issues. I hope you can join me in passing the word... without your help, it's only passing the word to others one by one...
  
  :)
• Reply #2 04/01/08  4:11pm
  
  inkentucky
  Hello, I beleive I am in the right place. I was in a mva 2yrs ago. Have had bad chest,arm,neck,hand pain ever since.The Drs are just telling me now I probly have nerve damage. Ive seen so many Drs I feel like I am going in circles. I also have degenerative disc in my lower back. A few yrs back I had a tumor removed from a nerve on the spinal cord. Still have symptoms from that too. Any way its nice to be somewhere you can talk to people who know how you feel! ;0
• Reply #3 04/01/08  6:02pm
  
  BelladonnaBane
  I'm hoping to meet people that can teach me about motor neuron neuropathy (my father has that) and I'm also hoping if anyone knows much about fibromyalgia and if it relates to your experiences in any way.
  
  Thanks for the invite!
• Reply #4 04/01/08  10:14pm
  
  petitep
  Belladonna, When I said... to name the top few diagnoses I have... Yes, I do have Fibromyalgia, endometreosis, severe allergies, asthma, GI problems, restless leg, vision, loss, dizzy and balance issues on occasion, as well as hearing buzzing problems.
  
  These issues fall in the category of "Autonomic Issues - Disorders"... which is the Autonomic Nervous System" - Think of ALL the things your body does automatically without you telling it to do it... and all of a sudden your system causes havoc... It's everything from vision to balance, breathing, asthma problems, skipped heart beats to low and high blood pressure and anything else that could go wrong does... It always seems to be another.
  
  Fibromyalgia is often mis-diagnosed, it's usually diagnosed because the person has been referred to a rheumatolist and not a neurologist. These issues are most likely autonomic related. Research and training has not progressed into the medical field enough to recognize it and be referred to an "autonomic neurologist" and not a typical neurologist. I'm one of the lucky few that can say that has a neurologist that is head of the department, is a teaching Dr. to the others and go to one of the leading neurology centers in the USA.
  
  He says the hardest thing is find all of the patients that are out there, in all the other clinics, they usually get referred to me when they have exhausted all others. Then he has to undo everything that the patient has thought they have had all these years... and give them one diagnoses "it's autonomic".
  
  We have the first autonomic support group in the country at our hospital and we truly all sound alike. If I can be of any help let me know...
  
  :)
• Reply #5 04/02/08  4:38am
  
  AnimalHeadb...
  Hi, you asked me to join this group, so here I am. LOL
  
  I do not have diabetes.
  I do have severe neuropathy in both feet.
  
  I also had 2 Morton Neuroma's removed from each foot. I have all that lovely stuff of burning, stabbing sensations, involuntary movement, and lack of feeling.
  
  Oh btw, I found tennise shoes that have a mesh like top are best for not burning yer foot. I also often wear open sandles year round. Getting extra wide shoes helps me. I use 4E and I do not have wide feet. They are hypersensitive with shoes and yet I don't feel the cold ground in the winter. Strange ehh?
  
  Do you ever use ice packs on the ball of your feet when they are burning? Helps me.
  
  Celebrex is great for the pain. Cymbalta is great for the pain too. I'm allergic to these meds so I'm taking Trileptal and it helps me a lot.
• Reply #6 04/02/08  12:59pm
  
  lesliew
  Hello Friends,
  
  My name is Leslie. I suffer from chronic pain due to degenerative disk disease, spinal nerve root damage and all that it encompasses. I joined this group because my brother suffers terribly from Dysautonomia with a multitude of symptoms and debilitating issues. I hope I can find some answers here for him and applaud petitep for all her work concerning this group. My best to all. xo
• Reply #7 04/02/08  8:23pm
  
  kellygrn
  Looks like I didn't introduce myself. I am KK & I have MS. For many years I had no feeling from the chest down. After 2 infusions of Tysabri, I can now feel pain. A good thing, bad thing?
  
  Don't have control of my throat a lot of the time. I am here to learn.
• Reply #8 04/03/08  1:22am
  
  ptense1978
  Hello, everyone...I am Tam. I have DDD in my lumbar and cervical spine (which has caused several spinal abnormalities). I also have severe Carpal Tunnel Syndrome, which has caused nerve damage in both wrists and hands. I also suffer from a heart condition. I now have migraines, due to the DDD in my cervical spine. I also suffer from sciatic nerve pain in my left buttock down into the back of my leg/foot. I now have severe pain in the back of my right thigh. Due to my leg weaknesses, I damaged my right ankle last Wednesday. I have to wear a brace and use crutches, when needed. I am looking forward to getting to know everyone in this group and hear all of your stories. Sincerely, Tam
• Reply #9 04/03/08  3:50am
  
  daz2007
  Hi everyone , Im here to learn more about Neuropathy and with some luck i will learn enough to lighten my constant load, that being cronic pain due to an iron bar being used to try to reshape my head.or in short the contsant headaches i have had for over 2years every day and night.
  speacial thanks goes out to my friend Petitep,Hugs- well done .
  Thanks to all here ,
  daz
  
• Reply #10 04/03/08  12:53pm
  
  Walt
  Hello, my name is walt.
  I have every thing you can name. I would like to learn more about neuropathy. I have autoimmune, autonomic, cancer, and about every thing else you can name. I have had 8 heart attacks and 2 strokes plus i refuse to stay dead, been there 3 times too. I look forward to learning more about the autonomic system from those who have lived it.

WELCOME to the Neuropathy group... For all those who have all types of Nerve Damage and PAIN! A GREAT PAIN resource area! Over 100 photos and 25 research topics on specific pain issues.