Idiopathic Neuropathy
 

I'm brand new to this - I was diagnosed with idiopathic peripheral neuropathy about 5 years ago. Seen numerous neurologists at a hospital near my home; they cannot find a cause - but it just gets worse. Pain in my foot pads initially, then my hands - surgery on both for carpal tunnel. Now my feet are both totally numbed out - and needle like pain in my legs. I've tried numerous meds - they knocked me out so I decided to live with the pain instead of the zombie feel of meds. No one I know has this - they look at you like, yeah right when you describe the sensations/pain. Hope to find others who have this same diagnosis.

I'm also new here. I understand Gammy Sue. I have the same diagnosis. It's been almost 6 years now. No known cause. I too get frustrated with others not understanding. It's difficult to describe in the first place. One minute we can't feel a part of our body and the next it's in excruciating pain. This disease needs more exposure and research. Most people don't know what the disease is. Diabetics get neuropathy as do alcoholics, drug users and people with aids as a secondary illness. Those of us with an unknown cause remains a mystery. I've seen several different neurologists and they all say the same thing. There's nothing they can do except offer medication for pain. Sometimes it helps. I'm able to do a little more than usual if I take something. Other times it doesn't touch the pain. I know the frustration. I've done a lot of research on the subject and I believe that toxins are the cause. My neurologist didn't deny the possibility. There are chemicals in almost everything we use. Soaps, laundry detergents, deodorants, lotions, beauty products, etc. Breast cancer patients are told to not use deodorants with aluminum chloro hydrate because it causes cancer. I use "the liquid rock" and it is endorsed by the breast cancer foundation as safe. What does that tell us? It's OK for the rest of the population? It's frustrating. I used to work in the floral industry and some of the sprays we used were toxic. I think I have my answer. So what do we do? Stop using the main stream products and use products that are safe. There are so many options today to choose from. I know it's too late for us but maybe we can prevent further damage and deter our family and friends from becoming sick. I look forward to hearing from you. In the mean time I hope you have better days.

http://i149.photobucket.com/albums/s.../welcome-1.gif Welcome to you both!

Please feel to visit our subforum on PN:

http://neurotalk.psychcentral.com/forum119.html

And our discussion part of PN forum:
http://neurotalk.psychcentral.com/forum20.html

There are some things that may help. Local topical applications for symptoms, and some supplements to help detox you or restore function to damaged cell mitochondria.

Thanks for posting. I put a question out on my FB page too - from all my friends/friends of friends only two people had heard of neuropathy. Mine started when we bought an old house and began restoring it. I thought initially it was from squatting to clean floors, sanding, etc. The house was built in 1907 - lead paint era. I did find that I had a very low Feratin level and have had two Feratin infusions at the hospital. It helped some with the jumpy legs trying to go to sleep, but didn't last long. My feet and hands have hurt so long, I think I'm just numbed out to the pain until I try to relax to sleep. Then, it's awful. I use Voltarin Gel (but it is aspirin based and I cannot take a bath in it obviously). I am beginning to tell that my gait (left leg is worse than the right) is also affected. I have told my doctor I will deal with the pain, my worry is that at some point I won't be able to walk. I wear CROCS - daily - if it weren't for them and their many styles....I couldn't walk. Barefooted I can feel every vein in my feet - feels like they are rolling as I walk. I have very high arches and one doctor told me that he noticed many of his patients did also. I worked in high heels for years. I blamed them initially. Thanks again for responding! I try to stay busy and keep my mind off things. Hope we find some answers!!! Blessings to you from North Carolina.

Hi there
 

I have had many years with numbness and pain that has gone into hands, and feet. Have you injured your spine, or had mri done ? That would be my first thought.

Gammy Sue & littlequeen64
 

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 and caring fellow members here to assist you. Our shoulders are here for support in many ways.

Again welcome, looking forward to seeing you around. My thoughts and prayers are with you. :smileypray:

Darlene :hug:

With those high arches--
 

--you really ought to have some of the hereditary sources of neuropathy investigated:

http://neuromuscular.wustl.edu/time/hmsn.html

http://neuromuscular.wustl.edu/time/hsn.htm

I did have an injury to my lower spine when I was about 18, but these problems didn't start until around 55. I have been seeing a chiropractor for almost a year - x-rays every 3 months - I just gave up on the neurologist after 5 years and no answers: but the chiropractic hasn't touched the PN. It's worse. No MRI has been done - but I've seen 4 neurologists had three nerve conduction studies and whatever the procedure is that tests your muscles. It's in my hands and feet. Both hands have had carpal tunnel release surgery with no impact on the neuropathy.

Oh my goodness!, I have just found this website and found others who are suffering with the same symptoms as myself. Please let me tell you my story.
I run my own flower business, a lovely little shop which at times gets really busy but I manage to run it on my own with the occasional deliveries from my partner.
This mothers day just gone, I was working very long hours and I started to feel discomfort in my feet and then I started to feel pain in my hands but I had to carry on and get my orders out for the next day, I could hardly sleep that night, I kept rubbing my hands and feet and felt pretty rough. I finished the last of the bouquets the next day, god knows how I kept going and when finally finished locked up the shop and called it a day,that was 6 months ago and sadly I have been too unwell to return. What happened to me since that day has totally changed my life.
The pain in my feet and hands became unbearable!! I made an emergency appointment to the doctor and he gave me strong pain killers and said that I had probably overworked which I too thought must have been the reason. The pain was getting worse day by day. I hobbled into the emergency A&E and begged them for something stronger,they gave me diazepam and said that it would help me sleep but it didn't, anyway this went on for weeks back and forth to doctors. I noticed that my right eyelid had dropped slightly and when I mentioned this to the doctor he said that it was nothing and would return to normal soon. My hands seemed to be locked in a grip like position and I could barely lift a cup or even pop the pillls out of the packet as I was so weak, I lost 3 stone in 5 weeks and was now weighing seven and half stone,I decided to change my doctor and was immediately sent to hospital with a suspected overactive thyroid but the doctors were not sure and so I stayed in for 12 weeks undergoing various tests. Blood tests, MRI, chest xrays,ultrasounds, bone density,and PET scan but nothing! The pain was terrible and my mobility was weak and unsteady. The pain in my hands lessened and I started eating again but the pain in my lower legs and feet never seemed to go away. I would rub the instep of my foot and it felt that the tendons were stretched tight in the arches, I dreaded putting any pressure on it when standing.
Well, I am out of hospital now and I have good and bad days, My feet still hurt but it is more numbing,pins & needles,ice cold blood running through my veins. My wrists ache as do my fingers and ankles, and I do very little as I am so tired all the time because of the meds I am on. When I have the energy I try and find out on the web what must have caused this terrible illness. As a florist I work with sprays,foams,cut flowers and plants. I had started to restore furniture so I was sanding and painting pieces, I wonder if any of this could have been the cause of this debilitating illness. I am sure the answer will be found through others who have gone through the same thing. My heart and hope goes out to you all x

Hello & Welcome!!
 

florist fran ,

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 and caring fellow members here to assist you. Our shoulders are here for support in many ways.

Again welcome, looking forward to seeing you around. My thoughts and prayers are with you.

Darlene :hug: