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| Name: | monica popp |
| E-mail address: | moniquesdrinques@yahoo.com |
| Name: | nicolas maalouf |
| E-mail address: | seasweet@lebanon.com |
| Name: | LOOPYLIZ |
| E-mail address: | Lizgnome@bigpond.com |
| Comments: | I absolutely hate the fact that we all have this crud,but at least now we know we are not alone,Thank You.~~~~Liz....Hugs Xxx. |
| Name: | Jeanette |
| E-mail address: | favorgranny@yahoo.com |
| Comments: | I was researching and went to this site.The bible states that the steps of a righteous man(woman)are ordered by God. I was diagnosed 6 years ago...not a diabetic. My husband was diagnosed 2 years ago(diabetic)We have done the world of drugs,presently I take cymbalta(specifically made for neuropathy).Last year,I had surgery and was given a dual pain stimulator. It helps the waist down,but not the arms or hands. I have neuropathy everywhere.Extreme weather is horrible. Prayer helps. God bless each of you as we wait for a cure.J. |
| Name: | Ana Suarez |
| E-mail address: | suar5271@bellsouth.net |
| Name: | Debbie Nance |
| E-mail address: | babewolf4@yahoo.com |
| Comments: | I was diagnosed over 10 years ago with pn. As the time goes by my disease seems to get the best of me somedays. But I make myself get up and go. The doctors tell me there is nothing else to do and I will only get worse not better. But God wont give us more than we can handle. I also have carpel tunnel, ruptured disk in my neck, fused disk in my spine lower lumbar, now my joints are begining to give me problems along with other areas in my back. I have cronic hyper-tension, diabetes, and heart disease. I am currently on 12 meds that I take some once a day some twice and other three times a day. So I feel for each of you and wish you well.. Take care... Check out my poem on this site I wrote it years ago. MY Precious Dream under Poems by Debbie. Hope it helps you.. God Bless and Keep you. |
| URL: | http://www.myspace.com/debbienance |
| Name: | Tina M Costigan |
| E-mail address: | brokenwingmending@verizon.net |
| Comments: | I just happened to google my own user name to see if it showed my items in e bay, and I had forgotten all about this dreambook,, It is so sad to know of all the people who are suffering so much chronic pain, and dr's who let us suffer. I just want to let everyone know that u r in my prayers, and if you want to talk, my addy is listed,, thanks and God Bless, Sincerely Tina |
| URL: | brokenwingmending@verizon.net |
| Name: | Michael J. Parks |
| E-mail address: | rachel@ls.net |
| Comments: | I suffer terribly from this disabling feeling from my stroke and considering accupunture. Any thoughts? |
| Name: | susie |
| E-mail address: | tullieboots@yahoo.com |
| Comments: | i enjoyed reading about different ailments people suffer as i have a book of my own and always sympathetic as to pain sufferers. i tried to send a message to one of your writers by clicking on his name i got the comment box with his address wrote the comment for him and sent it only to be told name is not registered what did i do wrong? |
| Name: | liz mann |
| E-mail address: | patch@matilda.com.au |
| Comments: | Hi,I am a 47yr old female with P.N.Had it now for nearly 4yrs, numb from waist down but the pain in my legs is excruciating, and now starting in my fingers.Tried Neurontin,Tegretol and now I am taking 600mg Lyrica,75mg Endep,5mg Oxycontin nothing seems to work for me,Opiates knock me for 6. Dont know where to go from here, can anyone out there help,There is no support group near me. Lizmindurbiz. Queensland. Australia |
| Name: | Janei |
| E-mail address: | janipur12@yahoo.com |
| Comments: | this is a cool site. I am so sorry for everyone's pain. I was an Avid runner and it all came to a screaching stop about a year ago. I wanted to blow my brains out all year but I got up and went to work everyday anyway. all the Dr's tell you something diffferent. anyway, Xanax and message therapy EVERY week and very mild excercise had helped me. I tried to run and now I am right back to feeling like a pin ball machine, I startd Lyrica and am going to a Dr, in Houston named Aziz Shaibani, He does the Skin biopsy to diagnose small fiber causes I keep all of you in my prayers |
| Name: | ED ABDON |
| E-mail address: | LUGIN2236@netzero.com |
| Comments: | diagnosed diabetic 2 by VA one year ago .came in because of hand and foot pain.just a beginner, starting neurotin and 800mg iboprofen.I like this site will keep in touch.This disease is too much a kept secret. |
| Name: | DiAnne Heidanus |
| E-mail address: | dheidanus@aol.com |
| Name: | DOUG NIXON |
| E-mail address: | DNIXON6486@AOL.COM |
| Comments: | LOOK FOWARD TO READING WHATS ON YOUR PAGE
DOUG |
| Name: | Ronald J Hawkins |
| E-mail address: | nighthjawk44505@yahoo.com |
| Comments: | i too am a PN sufferer, among other things i have been diaganosed with chronic fatigue and fibromyliaga. i have many problems with both my neck and my back. i am no longer able to work, and i stumbeled onto your site and seen that i too am not alone! I now take methadone 60 mG a day spaced thru the day. It has been a lifesaver to me. |
| Name: | jan stone |
| E-mail address: | phantomladyj@yahoo.com |
| Comments: | Hi!! Have the same problems as most of you. 4 back surgeries, 2 knee replacements, degenerative bone disease, 3 ruptured discs in lower neck, fibro, diabetes, I think may have been caused by some of the meds I have taken over the years but Drs. won't admit to. Also on nuerontin & pain patches but still have found no relief or any Drs that know what to do with me. Sooooo--- what's a person to do but like the Drs. say-- "Live with it" I've lived with this stuff for 20yrs & it's getting worse. The Drs here are afraid to prescibe drugs very strong because----"you may become addicted to them"-- what a joke!!!
I'm sure you all know what I'm talkin about & have been thru the same routine. It is really a sad situation, with all our technology & breakthrough in so many fields of medicine, why can't they help us with pain????? Just found this site today & it seems like a very informative place & so many people with the same problems. Well, I have rattled on enough--- keep up the good work!!!! |
| Name: | Dennis Dalziel |
| E-mail address: | ddalziel@cebridge.net |
| Comments: | Love your website, if you have any kind of list for emails please put me on it. I have had PN for 7 years and have tried almost everything. Same old story, nothing works. I just had 9 Botox shots in each leg and that seems to be doing me some good. Found out that my PN was triggering muscle spasms in my calves and thighs and that the apasms were going throughout my body, or that is the way that it felt. Between the shots and therapy I am having less pain, but still having trouble sleeping at night. |
| Name: | Tina Costigan |
| E-mail address: | brokenwingmending@msn.com |
| Comments: | I somehow, at this hour or 4'30 in the morning, up because of pain, second nite with no sleep, and I fell into this site by accident, well I dont believe everything is an ""accident". but I just read a few posts, and I was so grateful I started having tears roll down my face, NOw i dont HAVE to feel all alone, i need to check it out more, as i have a feeling i will be here alot and I am totally new to this, oh thank you,,,,,,,,, |
| Name: | Tina Costigan |
| E-mail address: | brokenwingmending@msn.com |
| Comments: | thank you thank you thank you for sharing, |
| Name: | Noreen |
| E-mail address: | autumncattery@yahoo.com |
| Comments: | Newly diagnosed with pn = meds not working. |
| Name: | Marilyn |
| E-mail address: | Malzner@socket.net |
| Comments: | I am very glad that I found your website. There are more people that have PN than I realized. I also have PN and it is very depressing. Have started taking a new drug called Lyrica. Will see how it does |
| Name: | Linda Prindle |
| E-mail address: | lindatexas@charter.net |
| Comments: | My neuropathy suddenly appeared following the IV administration of a solution with diluted hydrogen peroxide, supposedly the endorsed treatment for Epstein Barr virus (mono). Besides the damage to nerve endings, it turned out that the doctor flasely diagnosed me. I have suffered both burning and freezing sensations in my feet, legs, torso and arms. I take 2700mgNeurontin (generic) daily also Vicodin,Cymbalta and Elavil. My doctors all disagree as to my diagnosis. My whole body is on fire (internally) but everyone says I look "fine"--UGH! |
| Name: | Dee Deitz |
| E-mail address: | ddeitz@smnet.net |
| Comments: | I've had PN for 3 years now. Thanks for your website. |
| Name: | janey |
| E-mail address: | eyelady2000@yahoo.com |
| Comments: | On Monday 8-22-05, I go back to the neurologist for an emg of my lower spine. I hope they can figure this out. I have had "itching" spots in my toes then numbness. This started about 4 years ago and has progressed to about 2/3 of both feet. I know my lower spine is a mess. ?????
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| Name: | Chris |
| E-mail address: | chris44429@hotmail.com |
| Comments: | METHADONE METHADONE METHADONE!!!
I got PN 8 yrs. ago as a result of surviving the chemo drug Vincristin, which to its credit, beat back my late stage 3 lymphoma. The oncologist and chemo/pharmacist never warned me about the possible lifelong side affects of this drug which has left me with (if untreated) accute burning pins/needles and numbness in me feet. This started at age 29 and has not changed even a tiny bit since the day I woke up with the PN 8 years ago. I have tried every pain med and in kidney killing doses such as Vicodin 5/325s 12/day, Darvocet 16/day, Percocet10/500s 16/day, Endocet5/325s 16/day, Fentenil 200mg patch/2days,MS sulfate 200+mg/day, MS contin40s 240+mg/day, Oxycontin80s 240mg/day, Dilaudid4mg 6/day,and more .Those were just the opiate based pain pills not to mention all of the ssri's and various nerve and happy pills and the like . The biggest problem was not the different drugs but the ever increasing doses required to stave off the pain(Chronic pain syndrome). Your body is a natural "junkie" and will create more and more pain just to get more dope! I have never "abused" these drugs just tried to keep up with the pain. Finally after running out of money to buy my Oxy80's ($500/100pills at Costco!) I asked to try Methadone after reading about it as the preferred alternative to Oxy/MS Contin by my insurance company (Who was dropping me). After 1 month of dosing adjustments I found my dose (70mg/day split doses)and wonder of wonders it was the best thing that I have ever tried!3 years now and my dose has never needed to be increased. Methadone is a non-escalating drug yet completely satiates your body's need for opiate based dope and controlls 95% of my PN pain with very little heat related breakthrough. The best part of the methadone is the price, its way cheap ($.22/10 mg pill). This is the least yet most powerful and effective drug i've ever tried. Lifelong use is not a problem with very low side effects(Mostly drowsiness ). If your doctor is too chicken to prescribe it for you then find another who is. Out of all of the opiate type meds out there methadone is low on the DEA hot list and a good doc should not hesitate to give it out for legitimate pain. I hope this posting is hope inspiring to at least someone who is serving a life sentence in PN-pain prison. A PAIN FREE PRODUCTIVE LIFE IS YOUR RIGHT ! DEMAND PROPER TREATMENT FROM YOUR DOCTORS do not allow their fear of the DEA and "drug seekers" to keep you form a reasonably high dose of whatever pain med you need. A wish of smooth sailing to all. C. in Seattle |
| Name: | Joyce Aney |
| E-mail address: | aneyjo@yahoo.com |
| Comments: | 10 years since diagnosis of type 2 diabetes. First symptom was peripheral neuropathy. As the years pass, i experience more pain whenever i walk distances and at night. The drug I take for it is amatryptaline (sp) I was in a drug investigation study for 18 months for a drug called zenerestat. It was effective for me, but, unfortunately the study was discontinued because of a couple of abnormal liver scans among the study subjects. That was about 5 years ago. I keep checking back to see if studies will go on. |
| Name: | Joan Mason |
| E-mail address: | jayceema@chartermi.net |
| Comments: | I just found your site. I really enjoyed reading all the information and the poetry especially! I am going to read a couple of the poems to my family. I have suffered with CIDP for many years and it is a joy to find other folks online and to realize that I am not alone. I was looking for information about heel pain for my daughter and found you also. Thank you for your wonderful website! Joan |
| Name: | Ken |
| E-mail address: | kdf5@comcast.net |
| Comments: | I have had this crap for about 15 years all I can feel in my feet and legs is pain, swelling, and numbness and my feet are purple. It is now in my hands and it is get hard to walk. My case of PN is from diabetes T2. No medical and no way to get meds I need. Cannot sleep at night, just waiting to die. Hey, no hope is just that. |
| Name: | Carolyn Burgess |
| E-mail address: | carolyn88@charter.net |
| Comments: | Hi,
I am so glad to find another site for those of us who has to deal with PN every day. In my own case, the pain is not as bad as it was, for which I am very grateful. But I have a problem now that is trying to knock me off my feet. I have a terrible problem with my balance. It started with walking out my shoes,then to foot drop where I was stumbling over my own feet. My neuropthist told me to use a cane so that my brain would get the message to pick up my feet. It was not long before I fell and broke the left ankle. I was told to use a walker. My left foot was almost healed when I fell and broke the right ankle.I am at point now where I go out very seldom and then someone is pushing me in my wheelchair. My feet and legs are very weak and I have a hard time walking in my own house but I am still trying to use my feet and legs.I can no longer go grocery shopping, play with my grandchildren, or anything else that I once liked to do. I have applied for diability but I have not heard from them yet. I agree with all who tells of the way they are treated by doctors. I have been in tears more times than I want to think about because of bedside manners by some doctors. If they had to walk in our shoes for one day, I am sure they would be helpful and kind to their patients. I still have hope that something or someone will come along and find something that may help. I still have pain in my feet bur most of the time I am able to bear it.I hate that at 61, my quality of life has gotten this bad. I had so many plans with my husband that we will never realize because of my condition. There are so many people that have no idea of what PN does to a person, so it is nice to be able to converse with people who know what you are going through daily. I have been blessed that I can read and get on the computer. For all of us who battle daily with PN, I thank you for giving us another sounding board. Carolyn in South Carolina |
| Name: | Sandi Coen |
| E-mail address: | sandicoen@sbcglobal.net |
| Comments: | Looking for an e-mail support/info group for treatments etc. for peripheral neuropathy. |
| Name: | Steve |
| E-mail address: | jesuscomesfirstearthlink.net |
| Comments: | SUPER great site. Well, guess what!!! In 3 weeks I'm going to a Neuro and feel VERY certain I'll be diagnosed with PN (my FP already has)> BUT....after reading this WHOLE site, I haven't read where anyone has pinpointed their PN to the cause for me....namely, adverse drug reaction to a fluroquinolone antibiotic (LEVAQUIN), which has done BIG TIME harm to my muscles and tendons!!! I was on Lev. for 28 days and BOOM!!!. My tendons were weak and HURT. It got better after a year and was almost symptom free and relapse....this time worse. And I firmly believe there are certain foods which can trigger a relapse. I ate Campbells's Chicken Noodle Soup and 48 hrs later, I developed painful calf muscle...now I can't walk without pain and a limp. Check thwe med's.....many of them REMAIN in your tissues LONG TERM!! YEARS!!! But God is in control!!! Praises, Bro Steve |
| Name: | Melanie |
| Comments: | I am in Brisbane Australia and suffer from PN, Diabetes and Carpel Tunnel in my feet and ankles. It was great to find this site and know that I am not alone in my pain. It has inspired me to seek some therapeutical help and care for my diabetes better. |
| Name: | Zachary Makoba |
| E-mail address: | zaccamakoba@yahoo.com |
| Comments: | Waiting to read the first and last words. |
| Name: | Mary |
| E-mail address: | justmary253@aol.com |
| Comments: | This site is very helpful. I have not been officially diagnosed but I have all the symptoms. I believe it is a result of chemo 4-1/2 yrs ago since the symptoms started back then. They would come and go, now I am in constant pain and I am looking for a good neurologist in New York, can anyone assist me. Thank you so much in advance.
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| Name: | JoAnn Dodson |
| E-mail address: | buckwheat@relia.net |
| Comments: | I would just like to know if a person has to suffer the rest of his or her life, for spine problems. I have read alot lately about all sorts of problems. I had a diskectomy on the 15th of dec. 2004, and I feel like the incision on the inside of my throat is going to choke me most of the time, I had a c5 c6 anterior infusion, do not know if the operation helped or not. Still have the similar problems now. I would like to know if anyone has the same weird problems, too? |
| Name: | JoAnn Dodson |
| E-mail address: | buckwheat@relia.net |
| Comments: | I would just like to know if a person has to suffer the rest of his or her life, for spine problems. I have read alot lately about all sorts of problems. I had a diskectomy on the 15th of dec. 2004, and I feel like the incision on the inside of my throat is going to choke me most of the time, I had a c5 c6 anterior infusion, do not know if the operation helped or not. Still have the similar problems now. I would like to know if anyone has the same weird problems, too? |
| Name: | Cecile Shamis |
| E-mail address: | cile_61@yahoo.com |
| Comments: | Wouldn't it be great to find a way to stop this PN pain? |
| Name: | Barb |
| E-mail address: | balig@myclearwave.net |
| Comments: | Thank you for the site - it is comforting to know I am not the only one out there.. After seeing two neurologists I went to the Mayo Clinic..diagnosis was "autonomic ganlionopathy, likely immune system" in short - don't know how I got it, no cure, can only treat the pain. They said it may go away over a period of years or it could spread to my hands. Currently I'm numb from the ankles down. Sometimes it can be so depressing..I'd give anything to have one day with no pain at all.. maybe one day! Again, Thanks |
| Name: | Winston Hamby |
| E-mail address: | win@winoverpn.com |
| Comments: | D Rich: Please send me your e-mail address so I can send you some replies to your questions...
Winston Hamby win@winoverpn.com |
| URL: | http://www.winoverpn.com |
| Name: | D Rich |
| Comments: | Where is the best Hospital?
Who is the best doctor in the U.S. ? What is being done in research and where. |
| URL: | D Rich |
| Name: | R. .N. SCOTT |
| Name: | George |
| E-mail address: | Dornblas@aol.com |
| Comments: | I've been suffering with PN since 2000 and it is getting slowly worse. At first I had no pain, just numbness, but not total lack of feeling either. Now I have the pain that everyone suffers with in varying degree, so it seems to be progressing.
I've read over some of your lengthy site. I had a muscle biopsy, too, to test me for myolitis which I did not have - thank God! Thanks for letting me share. |
| Name: | Renae Cooper |
| E-mail address: | RCooper5239@charter.net |
| Name: | Jo Ann Robertson |
| E-mail address: | jojoerob@hotmail.com |
| Name: | SHIRLEY J. HERSOON |
| E-mail address: | SHIRLEYHERSON@JUNO.COM |
| Comments: | WHAT A WONDERFUL SITE. I AM SO GLAD TO HAVE LEARNED ABOUT IT BY WINN. THANK YOU ALL AND I HAVE ADDED IT TO MY FAVORITES. BOY, WE WITH PN SURELY NEED ALL THE SUPPORT WE CAN GET. I AM JUST THREE YEARS INTO IT NOW, AND IT IS TRAVELING FAST. SO THANKS FOR BEING THERE. |
| Name: | Jennifer McSparin |
| E-mail address: | jenna869@hotmail.com |
| Comments: | Hi Win, great website - thanks for compiling all of the stories - those come as a big help to me as I find my footing with this disease. Best wishes. |
| URL: | http://www.jennamac.com |
| Name: | Monica Popp |
| E-mail address: | moniquesdrinks@yahoo.com |
| Comments: | Hello, I am a 33 year old female dealing with peripheral neuropathy. There is no support group in my area and I feel so alone sometimes. I have had several ivig treatments, nerve conduction studies, a nerve biopsy, the meds are unreal...oxycontin, percocet, neurontin 800 mg 2 pills 3 times a day, duragesic patch, tegretol, xanax. I don't know how I function everyday. Sometimes I just lay there and cry..and then it makes it act up even worse. I want to thank you for the site I look forward for anyone that would be interested in corresponding with me that knows what I am going through. I just feel isolated. I would do anything to have a support group near me or anyone for that matter. I live in Cape Girardeau, MO. Please feel free to contact me if you need to vent or we can vent together. Thank you for letting me read everyones feelings I know EXACTLY!!!!!!!!!!!!!!!!!!!! WHAT YOU ARE GOING THROUGH!! Monica p.s. and nothing is worse than someone on your case if you lay in bed because the pain is unbarible..and accuse you of laziness! |
| Name: | steve lefton |
| E-mail address: | heybluewhy@aol.com |
| Comments: | used to be on Neurontin 8 x 400 mg per day; Vioxx 25mg uid AND PAROXETINE 120 MG DAY,,,,SHEEESH AND STILL BEAUCOUP BREAKTHROUGH PAIN sorry, no mean to "flame" anyone. Had HCV, liver doc says "neuropathic pain." Psychiatrist say "somatic pain." I have fallen through the cracks of AMA medicine. My newest, a Physiatrist laughed when she heard the above, "...All pain ultimately is neuropathic...."
btw,,,like your website. looking hard for Noludar, Mandrax, will soon try Ultram 50 mg bid when necessary |
| Name: | mille |
| E-mail address: | michellerudman@eastserve.com |
| Comments: | bad drugs does not agree with me |
| Name: | Lois Kuiper |
| E-mail address: | bigmarv@ens.net |
| Comments: | My husband and brother in law have neuropathy. They are both using Neurontin. My husband, Marv takes 2400MG a day, Mel, brother-in-law takes 3600 and they've both been told they can take as much as 5400MG a day. Marv just had right knee replaced and his neuropathy seems to have worsened in his right foot. I hate the lightning pains he gets cuz he jumps, grits his teeth and has a horrible look of pain on his face. He does most of the driving too and I worry that someday he'll jamb the accelerator or brake and get involved in an accident. I can't tell you how many people we run into that have this same problem though. I ran accross this site because I was trying to find out the truth about neurontin. There are lawsuits involving it's use on neuropathy. Apparently isn't approved by the FDA for that...but Marv wouldn't think about quitting it. It's the only relief he gets...Mel feels the same. BY the way, Marv is diabetic, Mel isn't. We've tried heat rubs too. Hard to use those cuz you can't always get it off your hands completely. Causes other problems then. Let's hope the combined efforts and complaints will result in an answer to this horrible problem. Good luck to all of you. |
| Name: | Garry Cyr |
| E-mail address: | cna@canadianneuropathyassociation.org |
| Comments: | Hi Winston.
You have done a good job ith your site. Keep up the good work and maybe one day we will find a cure for PN! Garry Cyr Founder of the Canadian Neuropathy Association |
| URL: | www.canadianneuropathyassociation.org |
| Name: | Jennifer Newnes |
| E-mail address: | newnes@newnes.screaming.net |
| Comments: | I have terrible pain and burning in the balls of my feet which restricts my life.I have had a few foot operations including fusions of both big toes although I was dubious as I kept telling the Orthopaedic Surgeon that the pain was
general,burning in the balls of my feet primarily,with occasional shock like pains through my toes.Needless to say my feet are very painful if I try to live a normal life ie walking/ driving makes them particularly bad.Could I have this PN. No-one takes me seriously-are these the symptoms? and what to do next? Thaks for reading.Jennifer |
| Name: | Debbie Brady |
| E-mail address: | littlepaul977@aol.com |
| Name: | SHARON |
| E-mail address: | SWENDY2P@CCS |
| Name: | SHARON |
| E-mail address: | SWENDY2P@CCS |
| Name: | MJT |
| E-mail address: | pagan6_1958@hotmail.com |
| Comments: | Was diagnosed with PN within last year. Rapidly progresssing symptoms, increasing pain in feet, legs in particular. Unbearable pain despite 3600 mg of neurontin a day, amitriptyline (which makes me sleep standing up stupid), quinine sulfate for leg cramps, clonapin (again, standing up stupid -- dangerous), fluoxetine for anxiety and depression, promethazine for nausea, and half a dozen other drugs. No one knows what to do or what has caused this. I am a former heroin addict, so none of the doctors at the UW here in Seattle will consider opioids (as the Duragesic patch or a pain cocktail) to control the pain. I am on methadone, but I can't tell whether it's helping with pain control or not. Seemed like it used to, but no longer. Has anyone in the Seattle area found any real help? I am only 46 and this pain is destroying my life. If they can't find the cause, can anyone at least stop the pain? Email me? |
| Name: | Becky |
| E-mail address: | becjustice@aol.com |
| Comments: | My Charlie was diagnosed 1 year ago with PN. Only one thing differs from what I've read here, he has NO pain.
Just the loss of control of the legs. I'm really stumped. Also, his speech has been affected. Drs say that one has nothing to do with the other. Speech problem started around the same time as the PN symptoms started. |
| Name: | Jane |
| E-mail address: | Janelsack@aol.com |
| Comments: | Wow, I have PN and I've been researching on the net, for 2 years, in order to educate myself, and share info with others. This is a great site. Thank you! |
| URL: | Jane |
| Name: | LAINE |
| E-mail address: | VWPARTS01@AOL.COM |
| Comments: | I HAVE READ MOST OF THE COMMENTS MADE BY EVERYONE AND IT IS SO GOOD TO BE ABLE TO SHARE THIS SCARY THING THAT IS HAPPENING TO US! YES, IT IS ALMOST IMPOSSIBLE TO EXPLAIN TO THE MEDICAL PROFESSION, MUCH LESS TO YOUR FAMILIES!
WHEN I FIRST BEGAN HAVING THE WEIRD SENSATIONS IN MY LEFT LEG AFTER SURGERY TO REPAIR A BROKEN ANKLE, THE 'ELECTRIC SHOCK SENSATIONS' WERE BLAMED ON A FAULTY METAL IMPLANT TO 'BOLT' MY ANKLE TOGETHER. ONE OF THE SCREWS(6) WAS FOUND TO BE LOOSE CAUSING SCAR TISSUE TO BUILD UP AND PREVENT THE NERVES FROM REGENERATING. AT LEAST THAT IS WHAT I WAS TOLD BY A 2ND OPINION DOCTOR A FEW MONTHS AFTER HAVING THE IMPLANT TO REPAIR THE ANKLE I BROKE (TRYING TO KEEP SOMEONE ELSE FROM FALLING ON AN OUTSIDE STAIRS. THAT WAS IN 1995 AT A SPA RESORT IN SOUTHERN CALIFORNIA WHILE VISITING MY SON. I WENT THROUGH ALL THE BEWILDERMENT OF NOT KNOWING WHAT WAS HAPPENING TO ME, BUT KEPT ACTIVE AND RAN MY OWN BUSINESS, ETC. THE WORST PART FOR YEARS WAS THE AWFUL 'ELECTIRC SHOCK' SENSATIONS WHICH ESCALATED IN BED AND MADE IT HARD TO GET EVEN A FEW HOURS SLEEP AT A TIME. I WAS GIVEN ALL THE 'CRAP' THE DOCTORS KNOW ABOUT - AMYTRIPTOLINE, PREDNISONE, NEURONTIN, ETC. MOST OF THEM WERE OVER PRESCRIBED TO THE POINT THE THE NEURONTIN RENEDERED MY BODY HELPLESS IN THREE DAYS ON A DOSEAGE OF 900 A DAY!. I HAD NO CONTROL - I STEPPED OUT OF BED AND SLOWLY MELTED TO THE FLOOR! THIS HAD BEEN GOING ON FOR 3 YEARS, SO I GOT COPIES OF ALL MY MEDICAL RECORDS AND BOOKED MYSELF INTO JOHNS-HOPKINS, WHEE MY SON DROVE ME TO. ALL THE DOCTORS WERE PATIENT AND TOOK TIME TO TALK WITH ME AND PERFORM TESTS. THEIR NEURO TOLD ME I HAD BEEN OVERDOSED ON THE NEURONTIN - SHLD HAVE BEEN STARTED ON 100 A DAY AND SLOWLY BUILT UP TO 900, THEN VERY SLOWLY INCHED UP IF NO RELIEF GOTTEN. IT DOES HAVE ADVERSE SIDE AFFECTS. RIGHT NOW, I HAVE TAKEN MYSELF OFF (SLOWLY) OF THOSE DRUGS. OVERDOSING ON THOSE DRUGS CAN BE HARD ON THE HEART AND THE KIDNEYS SO LAST YEAR I HAD A HEART ATTACK! I HADN'T FELT MYSELF WHILE TAKING THE VARIOUS DRUGS, RESTLESSNESS, WEIRD DISCOMFORT, A WEIRD FLUTTERING SENSATION THAT WOULD WAKE ME AT NIGHT, ETC. BUT I HAD ALL THE TESTS DONE, INCLUDING STRESS TESTS, ETC.,4 MONTHS BEFORE. UP TO THIS POINT, I ONLY HAD THE P.N. IN THE LEG I HAD BROKEN IN 1995. I WAS ON 4 DIFFERENT MEDS FOR A MONTH AFTER THE HEART PROBLEM. I WAS RUSHED TO THE HOSPITAL WHEN I HAD THE ATTACK (WHILE IN MY DOCTOR'S OFFICE FOR A REGULAR CHECKUP!) AND THEY DID AN ANGIOPLASTY AND IMBEDDED A 'STENT' IN THE LEFT SIDE OF MY HEART. AFTER EASING OFF THE DRUGS, I FOUND I HAD NEUROPATHY IN BOTH LEGS AND SINCE IT HAS MOVED UP MY BODY (WORSE ON THE RIGHT SIDE) AND THE GROIN WHERE THE INVASIVE SURGERY WAS DONE HAS NEVER STOPPED HURTING! AND, LIKE THE EXPERIENCES OF OTHERS WHO HAVE WRITTEN HERE, THE NUMBNESS AND PAIN HAS REALLY ESCALATED OVER THE PAST MONTHS SINCE THE HEART THING, MAKING ME FEEL FRAGILE ALL OVER AND WEAK AND HARDLY ABLE TO WALK. I HAVE BEEN SURVIVING ON NATURAL THINGS LIKE BROMELAIN (ENZYME EXTRACT FROM PINEAPPLE IN PILL FORM FROM HEALTHFOOD STORE) GLUCOSAMINE/CONDROITIN.MSM IN PILL FORM FROM THE DRUGSTORE AND BEFORE BEDTIME - A GENEROUS SLATHERING OF MAXIMUM STRENGTH FLEXALL. I HAVE TRIED A LOT OF THE LOTIONS AND POTIONS ADVERTISED ONLINE FOR THREE TIMES THE COST OF FLEXALL, BUT FOUND THAT NONE OF THEM DID AS WELL AS THE FLEXALL. ALSO, A GOOD HOT CUP OF CAMOMILE TEA AND AN ALEVE (OR ADVIL) AT BEDTIME SEEMS TO HELP TOO. DIDN'T MEAN TO WRITE A BOOK, BUT SO GLAD TO READ OTHERS COMMENTS AND REALIZE THIS IS "REAL" AND NOT IMAGINED! THANKS FOR SHARING. I HEAR THERE MAY BE SOME HELP SOON FROM SOME OF THE RESEARCH BEING FUNDED. LETS ALL KEEP OUT SPIRITS UP AND LOOK FORWARD TO OUR 'HEALING' SOON! |
| Name: | Debbie W. |
| E-mail address: | debpooh29@comcast.net |
| Comments: | Was just diagnosed with PN of my feet. The doctors have not found the cause yet. I am having a seral nerve biopsy on April 8th. If anyone has had this done, please let me know what to expect. I also have a herniated disc in my lower back L5-S1. It was surgically repaired 8 years ago but has come back. I have an appointment with my orthopedic doctor at the Cleveland Clinic on April 13th. Wondering if this could be causing my PN. I am taking Neurontin 100 mg. 3 times a day - it helps somewhat. Could not take Amitryptoline because it made me feel like a zombie. As I was reading everyone's entries, it was good to know that I am not the only one who experiences these strange symptoms! |
| Name: | Janice M. Curry |
| E-mail address: | db8286@dragonbbs.com |
| Comments: | I just found this site trying to find some information for my aunt and myself. She had never heard of PN except for diabetics and wants to know how I got it. I wish I knew that myself. I have been suffering from the itching, burning and numbness for years but as I was way overweight the doctors said they really couldn't tell. After bariatric surgery I am finally small enough that they are willing to try to sort out spinal stenosis from PN effects. I will be taking maximum Neurontin doses and I sure hope I see some improvement. I have three years to retirement and I am determined to make it. Love this website. I also belong to the Neuropathy Association. Plan to read a lot more later. Maybe I will find some ideas to take to my doctor. |
| URL: | Janice M. Curry |
| Name: | pat wozniak |
| E-mail address: | dvd0731@aol.com |
| Comments: | Your site is excellant I have read more then half of what everyone wrote about their PN> I am tired right now but I hope to come back real soon. Pat |
| Name: | Sandi |
| E-mail address: | sandirg@earthlink.net |
| Comments: | Just discovered this site in an attempt to get more in PN. I finally got a preliminary DX two weeks ago..after going through a series of docs over the last 10 months. The prior PCP told me he could refer me to a neurologist with my symptoms (burning feet, tingling, etc) because they would "laugh" at him! Never went back..The foot pain/numbness/tinglinh has been going on for 6-7 years now. Had had a prior DX of fibromyalgia back in '95 and had been focused on getting that manageable..which I've done.The PN is much worse to deal with. The sensations moved to my hands some months ago and in the last 6 weeks have moved into my hands and now up my legs and arms. Neurontin has helped a lot but have had to play with dosage because it made me really sleepy. Doc prescribed Vicodin and I rationed it to no more than 3x a day. Helps the pain..however, made me depressed and withdrawn and highly irritable. Affected my ability to drive..so only taken then in the late afternoon. Currently taking Ambien for sleep and that helps more than anything else. My nightime combo is Ambien and Amitryptilne. Daytime in Neurontin 3x day, in varying doses..600 in am, 300 noon and evening. What I most wanted to share is to keep on trying the various meds and dosages but don't overload on them. It's hard to see what's working. The reality is that the meds take time to work. It's easy to overmedicate and then the meds are all fighting each other. For the foot problems..try to locate a nurse's uniform store and look for a brand called Nursemates. They are on line at www. nursemates.com. Look for a slip on model called "Feather". I wear mine ALL the time. They support your feet and cushion wonderfull. Sorry to run on like this..but this site has been an immense help. I appreciated reading all the posts, they have helped me feel not so isolated. The only other question I have is..how do you get your family to understand what we're going through??? I get the "you look just fine" look and the inimation that I'm just not trying hard enough. And..they don't know the half of it. Thanks again for letting me unload!
|
| Name: | Phil Morton |
| E-mail address: | phillip.morton2@ntlworld.com |
| Comments: | I found this site by just searching for PN and am touched by your comments.
I am a 34 yr old Brit with insulin depandant diabetes and developed diabetic PN around 2½ years ago. I am also a father to a young son and have a very understanding wife. Like many of you the burning pain to my feet and ankles caused many sleepless nights and without medication I am sure that this would continue. I had trouble at first getting my local doctor to both diagnose and then prescribe any pain releif other than control your blood sugar. Eventually I consulted the local Diabetes Expert who prescribed Neurotin (In UK it is called Gabapentin)in a small 300 mg doses 3 times a day. Later I was to increase my dose to 600 mg 3 times a day and then take Amatryptaline up to 25 mg at night. My quality of life for the early year or so was poor but now I am beginning to understand my condition. While I cannot ever get rid of both diabetes or PN I have now a better life now mainly due to the diabetes experts and not the local doctor. He informed me that Neurotin works as being permanantly in the blood and not as a pain killer and with this in mind I have used it on a 6 hour basis. Occasionally I will take a dose close to bedtime instead of Amatryptaline and have noticed a greater pain releif in the morning. My side effects have been occasional headaches and common tiredness although I could not confirm if I have suffered any memory problems and as a result my PN is bearable 90% of the time. For those with Diabetes get a good hB1a below 7.0 mmol and like me you could notice a difference. My next target is the bringing my weight down. All of you out there never give up hope even when it is 4 O'clock in the morning and you've only had 5 hours sleep in the last 3 days coz of the pain. Go see your experts and keep seeing them again and again and again until they can provide you like me a treatment we all deserve. |
| Name: | Nina D. Harris |
| E-mail address: | ninadharris@aol.com |
| Comments: | the more we share with each other, the more we will know and PERHAPS WE CAN FIGURE OUT HOW TO FIGHT THIS OBNOXIOUS DISEASE!!!!! I've been diagnosed a year with both feet and ankles involved. methadone helped immensely. i am on 60 mg. a day. works like a dream, but i still feel like i've got concrete feet and legs! Love and prayers to you all!
HUGS, nina |
| URL: | Nina D. Harris |
| Name: | Debbie Brady |
| E-mail address: | littlepaul977@aol.com |
| Comments: | Hi...Several years ago I noticed that my feet were numb...I did not know why...I thought it would go away...but it only got worse...I had never been one for doctors...So I put it off...I only progressed to having burnig, stinging pain up and down my legs into my lower back and hips...I sat in the warm baths no help....I took the nureotin no help....only headaches....I go to the doctor religiously...Hoping that he might have a cure...To date..After many test..I still have this terrible disease...Now it has spread into my upper extremites...I also now have been diagnoise with Carpel Tunnel Syndrome...Needing to have the surgery...But finances dont permit it...We are trying alternative measures but I have a wonderful doctor who helps with my pain...I get shots in my back...I take high doses pain meds..But with all this the pain never goes away..only dulls..to make it bearable....I know all about the weakness that we have...the buring sensations...the tingling....about it all....I only hope that it dont take my internal as fast as it has my limbs...I hope that one day they will come up with something to help stop it in its tract until then we will suffer from this silent killer.. |
| Name: | Tony Jacubs |
| E-mail address: | antonyjacubs@yahoo.co.uk |
| Comments: | I have suffered from PN in my feet for twelve years. The only help I get is from Neurontin - 2400mg per day. This is I am told by my neurologist the maximum dose. I have tried almost every supplement and alternative treatment but with no success. I wear trainers (sneakers) all the time I am out walking or driving. If anyone has any other ideas no matter how odd!! please let me and all other sufferers know. Thank you for the chance to "talk" to you all. Good luck to everyone in their quest for help with the "silent disease". Tony |
| Name: | cecil |
| E-mail address: | fla0426@aol.com |
| Comments: | First I want say you must believe in GOD.He is the healer
He uses the doctors sometime,but it is though prays & faith that you get healed.If he can take you to it,He can bring you through.So just keep on PRAISING HIM & givimg him all of the GLORIA.You must beleave in him without a shadow of douth.I also want say that I thing that some of these things read on this website that it sound like a lot of this is what my wife has which is what thy called transverse mylis. She had alot semptoms that alot of the things you all hve said.Only she woke up & was paralised waist down one morning It took two monthes in the hospital and a lot testing.Also PRAYS with faith.Now she is waking & driving a car.The doctors some the best in the world.Yes it is in Jackson Ms University Hospital.Also one the best doctor to operate to get you back & spine & Brain check or operate on is Dr. Jack L. Moriaty. Mississippi Neurosurgery & spine cente. Their web is WWW.mnsc.net MAY GOD BLESS EACH&EVERY ONE OF YOU. |
| URL: | Cecil Mccrory |
| Name: | Joe |
| E-mail address: | Polyjoee@aol.com |
| Comments: | Hi,
This is just a small part of my story that i like to share with you....I was diagnosed in 1988 with Progessive Peripheral Polyneuropathy of unknown Etiology ,Idiopathic.The tingling and terrible burningpain started in my right hand finger tips spread to the left hand up to both shoulders down to both feet and up to the thigh....It felt like someone injected airplane fuel in my arms and lit up a match .This neuropathy hit me like a cannon ball ....Legs turned into rubber that i couldn't walk or stand ,my arms were numb and heavy as if full of lead,i couldn't use my hands, couldn't eat,think ,perfuse sweating,was losing weight and didn't know what to do....After spending 3 months in three different hospitals and doing many procedures, Mri's,CAT scanning,EMG & nerve conduction,blood,TB,spinal taps and 2 sural nerve biopsies etc. Doctors couldn't find anything in my body that was causing this neuropathy and had me shipped out to this rehab center where i spent 7 weeks learning how to walk and use my hands again .It is a must to take all this one day at a time and hope for best.....I take my Neurontin 600x4 mg. and pamelor 75mg Daily and of course Vitamin B-12 Caps...This has helped some of the pain,but the burning never goes away. Note that i have Idiopathic neuropathy and the medications that help me may not help everyone in the same situation......Let us all stick together like crazy glue and fight the disease that can shout with pain and terrible burning. You can also fight this disease by joining The Neuropathy Association,they there fighing for you. http://prv-groups.aol.com/livinwneuropathy/groups_home.adp Polyjoee/joe " |
| URL: | http://publish.hometown.aol.com/_cqr/qp/qp.adp/save/polyjoee/myhomepage/index.html?cc=english |
| Name: | Professor David B. Bell |
| E-mail address: | davebell@camden.rutgers.edu |
| Comments: | Hi:
After prostrate removal 8 years ago followed by radiation treatments, I started noticing that the bottom of my feet were very sensitive. I could not walk on the bottom of a swimming pool because the unevenness of the bottom would send pain up my legs. I started noticing that my feet burned at times and especially at night it would be more severe. I was diagnosed with PN and have been taken 1600 mg of neurontin a day 4 4's...I am scheduled to see a pain doctor who specializes in acupuncture. Time will tell. Thanks for listening, Dave Bell |
| Name: | evelyn bowers |
| E-mail address: | evelbowe@cs.com |
| Comments: | this site has helped me a lot thank you all |
| Name: | BRUCE HIMELFARB |
| E-mail address: | brhimel@juno.com |
| Comments: | I AM A 68 YEAR OLD MALE LIVING IN ATLANTA. HAVE SENSORY PN, CIDP, ON IVIG WHICH HELPS FOR A WHILE, THEN I'M BACK WITH POOR BALANCE, LOW THRESHOLD PAIN, NUMBNESS IN THE EXTREMITIES.
I GET ALONG WITH 10 MG NORTRYPTILENE NIGHTLY, AND TYLENOL. I DRIVE A HAND CONTROLLED CAR, AND USE A WALKER. I'M GOING TO TRY WATER EXCERCISE, RECUMBENT BIKE, AND SOME STRETCHING EXCERCISES. |
| Name: | Doug Woodson |
| E-mail address: | dwoodson@sc.rr.com |
| Name: | Margarert |
| E-mail address: | jmansmom@optonline.net |
| Comments: | This is really a great site for PNers. Thank you, Good luck |
| Name: | Joe |
| E-mail address: | Polyjoee@aol.com |
| Comments: | Winston ,you have the most beautiful PN site i even seen.Good luck and keep up with the work you doing to benefit all of us PN'S. |
| Name: | J. Antonio Lugo Jr |
| E-mail address: | josealugo@earthlink.net |
| Comments: | I got Diabetes Mellitus Type 1 at the age of 22 right after my USMC enlistment. While in the Marine Corps I had no health problems or durring my childhood. When I was diagnosed with Diabetes Type 1 I had blood glucose level of 810 I was feeling very poorly and had lost allot of weight. I was young and strong and hesitated going to the Hospital. When the Doctor informed me what I had I thought the Doctor had made a mistake. No one in my family had it and I thought Diabetes only affected people over weight. I did not follow a diet and in about a year I ended up in a bad car accident in a comma were my head broke a windshield and my arm broke in differnt places while bending a steering wheel. I was in a comma for 3 days before awakening and had to be sedaded for 2 days because I did not want to be hospitalized. I only stayed a the hospital for 5 days in total and signed my release against Doctors recommendations. I started sort of half taking care of myself and at the age of 28 got married and became a father at the age of 29 to the most beautiful Princess in the world. By that time even though I took care of my diabetes very serious and dieted and was on a strict insulin program I had developed neuropathy and ancle pain was very hard to overcome which I did but had to many low blood sugar attacks were I lost my memory and ended in allot of car accidents and lost in malls and so many other things to many to mention. It finaly cost me a divorce to the only woman I ever fell in love with which happens to be the mother of my Princess. Now 37 soon to be 38 Oct.13 of 2003 Im retired on disability here in Orlando, Florida and if I had one wish come true is to had never had diabetes but if the only way to be the proud father and to be with the most beautiful woman in the world would be to have diabetes I wish I had taken better care of the diabetes so the complications would not had affected my life the way they did. I hope many read this few lines and take care of their diabetes with care. |
| Name: | M Reily |
| E-mail address: | moreily@prodigy.net |
| Comments: | I had spinal fusion at L4&5 surgery 2 1/2 years ago and the pain never got better. Matter of fact I told the Dr. I had pain in both legs now and it was worse.He thought with time it would get better. I now have what is now PN with Failed Back syndrome.And there is no way they can help.I am on 1800mg of Neuronton a day and ultram for pain and on clonazepan which helps the burning.I also take ambien for sleep.Three years ago I bicycle over 20 miles a day. Now I am lucky to get to the store.I pray each night for all the people who have PN. We are not alone. Reily |
| Name: | Donna Resucher |
| E-mail address: | reuful@strato.net |
| Comments: | What a wonderful site. Keep up the good work.
I have had PN for over 12 years, due to cancer and radiation. Have run a support group for the past 4years in Avon Park, Fl. I am going to share some of the poems with the group tomorrow. |
| Name: | Chuck Anderson |
| Name: | Krankenversicherung Vergleich |
| Comments: | I like your site. Keep up this great resource. best greetings. |
| URL: | http://krankenversicherung-vergleich.1x1sparen.de |
| Name: | Joe Damain |
| E-mail address: | wildguy@aol.com |
| Comments: | Hey, what a great site. keep up the good work! |
| URL: | http://www.humangrowthhormonestore.com |
| Name: | Angel |
| E-mail address: | Slpwlkr69j@aol.com |
| Comments: | Hi I am 18 yrs. old I am so happy I found people who I can
relate to. I have five herniated discs in my neck from a fall awhile back. About two years ago out of nowhere I stepped out of bed and to my horror my feet had no cushions to walk on just bones. They the Doctors did not know what it was so they fed me drugs and did nothing so it got worst and I ended up in a wheelchair. The pain was like living in hell all through my body I could not let water hit my body or let anyone touch me,wear clothes and I weighted 89pounds. I just wanted to die now I take Neruontin 1800mg.,Oxycontin,Klonopin,Ambien and nothing helps and they still have not given me a honest answer to what I have. They tell me it is some kind of Neuropathic condition but I still wait in hell. If someone could help me I really do not have family support and I cannot deal with this horrible fate. I thank you for letting me vent & you are all in my prayers. |
| Name: | Angel |
| E-mail address: | Slpwlkr69j@aol.com |
| Comments: | I finally found a place where I can relate to and maybe
find a few friends. So far I know i have some kind of nerve thing going on and it is hell, I cannot deal with this torture anymore. I am 18 yrs. old have five herniated discs in my neck & burning pain all over my body. I am being treated by doctors who do not care what so ever about me & my treatment plan because I am on SSI. It hurts so much I cannot go on anymore,and no one believes me even my own family at times. I am on 1800 mg.of Neurontin,which is useless,80mg. of Oxycontin,also useless,Klonopin,Ambien and nothing takes this burninig hell away. I am sorry to be so outspoken on your site,but I really need HELP & I CANNOT FIND IT. I pray to GOD for relief & for all who are suffering needlessly I cry so hard does he hear me? Please if someone could help me to understand what is happening to me I would be forever grateful. You are all in my Prayers & thoughts. GOD BLESS ALL!!!!!!!!! |
| Name: | Jenny (PN Partners) |
| E-mail address: | Barnsley27@msn.com |
| Comments: | Thank you for a very informative site, I found it via PN partners.
Blessings, Jennyone |
| URL: | http://www.BARNSLEYANDFAMILY.com |
| Name: | Francesca Lorenz |
| E-mail address: | florenz@richtravel.com |
| Comments: | I have MG. I've had it since 1985. Unfortunately, other disorders develop, ie diabetes and eventually PN.
Thanks for the information. |
| URL: | http:www.richtravel |
| Name: | Francesca Lorenz |
| E-mail address: | florenz@richtravel.com |
| Comments: | I have MG. I've had it since 1985. |
| URL: | http:www.richtravel |
| Name: | robert green |
| E-mail address: | g.thriftybobby@verizon.net |
| Name: | robert green |
| E-mail address: | g.thriftybobby@verizon.net |
| Name: | robert green |
| E-mail address: | g.thriftybobby@verizon.net |
| Comments: | I was just diagnosed with pn, my neuroligist is suggesting surgery to allow more space in the neck ligaments for spinal fluid to flow my mri showed hour glass restriction restricting the floe of spinal fluid, has any one had this surgery and was there any improvement
I would like to hear from anyone who went through this g.thriftybobby@verizon.net |
| Name: | Karl |
| E-mail address: | karl4life@aol.com |
| Comments: | Howdy....
just checking in to see what you have. Great |
| URL: | http://members.aol.com/ihsoa/ |
| Name: | Joseph P. Biscoglio |
| E-mail address: | joepb30@juno.com |
| Comments: | Great site you have here! I will tell others about it. Keep up the great work! |
| Name: | Mary Lipscombe |
| E-mail address: | barnsleyandfamily@msn.com |
| Comments: | I find the tips very interesting and helpful.
Thank You Mary UK |
| URL: | http://www.BARNSLEYANDFAMILY.com |
| Name: | Patricia Armstrong |
| E-mail address: | richa@vabch.com |
| Comments: | Winston,
This is great! I will be visiting again and will pass the word on to others with PN. Hugs, Patricia |
| Name: | julie kiernan |
| E-mail address: | familyjule1.1@netzero.com |
| Comments: | I,m so happy that the effort is put forth to educatr the people that don't know about pn, and the other effort to unite those of us touched by this demon disease so we can, in the power of our numbers,reach out and rid ourselves of this agonizing enigma. |
| Name: | Diana Stallbaum |
| E-mail address: | di-43@tds.net |
| Comments: | wonderfull site its nice for us pn'ers to come to.
have a pain free day and GOD BLESS YOU DIANA |
| Name: | Dawn |
| E-mail address: | earlydawn1963@aol.com |
| Comments: | I just found out about 6 months ago that I have PN, but I have been in pain for 7yrs, the severe pain started about 2yrs ago, I now take 800mg of neuroghtin,100mg antitriptlyn and 10mg of methodone. I do have a few good days, but I have a lot of bad days, the only way I find out any information is on these web sites but I have not met anyone close to me, I am in Seattle e-mail me so we can chat. |
| Name: | Trevor |
| E-mail address: | Trevor798@yahoo.com |
| Comments: | nice guestbook and site |
| URL: | http://www.domains-links.com |
| Name: | Jane |
| E-mail address: | janes10606@aol.com |
| Comments: | I have idiopathic, familial PN, as does my brother and niece.Dx 3 yrs ago. Take vicodin at night and use lidoderm patches. these are amazing and really reduce the pain level for me. I am active and try to be in charge of my condition. This is another wonderful site. Looking forward to meeting you all on line. Jane |
| Name: | jennifer |
| E-mail address: | jenn9075msn.com |
| Comments: | have neuropathy from diabetes maybe someday we can live in a pain free world my best of look to everyone and hang in there. |
| Name: | nancy merritt-redmond |
| E-mail address: | nancyredm@aol.com |
| Comments: | HAD ETIOLOGIG PN FOR 18MONTHS NOW IN MY FEET. BEEN EVERYWHERE. CANT STAND THE PAIN ANY IDEAS PLZ WRITE. HELP |
| URL: | NANCYREDM@AOL.COM |
| Name: | nancy merritt-redmond |
| E-mail address: | nancyredm@aol.com |
| Comments: | HAD ETIOLOGIG PN FOR 18MONTHS NOW IN MY FEET. BEEN EVERYWHERE. CANT STAND THE PAIN ANY IDEAS PLZ WRITE. HELP |
| URL: | NANCYREDM@AOL.COM |
| Name: | D.Phillips |
| E-mail address: | Dale 6056@msn.com |
| Comments: | I am a 42 year old carreer costruction worker.Iwas daignosed with PN two years ago.I have sneeky suspicion that it has been attacking my body for much longer .It finally took a trip to the pain clinic to find out the truth .Gee what a present for my sobriety to find out the very thing I was using to kill the pain was the origin of the pain itself .Now I am on 900 mg of nuerontin a day hydrocodone prn and klonopin at night .Being as I continue to build and work in heavy construction it is most difficult to traverse the mud and terrain on snowy & rainy days .Not to bum everyone out ,I work every day and still give the young guys a run for their money .I tell everyone that everyday up on my feet is bonus and I take it one step at a time that is why god gave me two feet .Well good bye for now ,prayers to every one and thanks for the forum |
| Name: | Stella |
| E-mail address: | Stella985@yahoo.com |
| Comments: | Thanks for a great site. I'll be recommending it to friends |
| URL: | http://www.domains-links.com |
| Name: | Lisa |
| E-mail address: | lalbin@greenhills.net |
| Name: | Rob |
| E-mail address: | Rob79@yahoo.com |
| Comments: | Great Site. Visit Mine. <i>!</i> |
| URL: | http:// |
| Name: | Theda Brock |
| E-mail address: | thedasm@earthlink.com |
| Comments: | I am a victim of PN and stopped in to visit your site. |
| Name: | Sandy Sugar |
| E-mail address: | Sandy32361@aol.com |
| Comments: | My Mom has had Pn for about 7 years now. I read many
of your comments and they're just like my Mom. We've tried creams, neurotin, etc. but nothing seems to help. God bless all of you that are suffering with this disease. |
| Name: | L. Marx |
| E-mail address: | eamarx@aol.com |
| Comments: | looking for help for my Mom's pn |
| Name: | Brian Hamby |
| E-mail address: | brianserenity@yahoo.com |
| Comments: | Hey, some neat Hamby stuff I thought you might like to look at:
http://www.hamby1.freeserve.co.uk/ |
| URL: | www.geocities.com/brianserenity |
| Name: | Fran Kulesa |
| E-mail address: | kulesa@starpower.net |
| Comments: | I do belong to Neurology Org. (sp?) paid my dues too haha
The information I got from the website is helping me make sure that I get the right tests as I have PN and don't think I've had them - now I have a good neurologist and took him Rose's information regarding B12 deficiency tests - he didn't get angry - he is doing them and knew about them - I am so happy to belong to this group of such nice people. Also the info on how to deal with cramps etc. has been great too. Thanks for all the help!!! Hope I can help someone too. Fran |
| Name: | Jana Colver |
| E-mail address: | jana3076@yahoo.com |
| Comments: | Another way to gain support for PN is to join the Neuropathy Association. Their website is www.neuropathy.org. Their donations often go towards helping to find a cure/help for this disease. |
| Name: | Wanda Simmons |
| E-mail address: | skeeter_78382@yahoo.com |
| Comments: | I am 66 years young. My pn in my feet and legs as as a result of taking chemo. I am taking 200 mg of neurotin nightly. Sometimes it is of no help. I also use prescription support stockings which help at times. I can tolerate the pain during the day, but the nights are miserable. I'll have to admit that it is difficult to walk the malls and shop. |
| URL: | Wanda |
| Name: | R Pridmore |
| E-mail address: | BelleAndy1@aol.com |
| Name: | Brian Hamby |
| E-mail address: | brianserenity@yahoo.com |
| Comments: | Hey, your son just giving you something to read as you obsesively check your website! Give me a call tomorrow evening or so to talk about next weekend.
brian |
| URL: | www.geocities.com/brianserenity |
| Name: | Richard |
| E-mail address: | wilhite_rick@hotmail.com |
| Comments: | Dx'ed with PN couple years ago. Burning feet or numb toes..depends on the weather I think. Was on neurontin, but made made me feel numb, tired. Doc put me on Topamax 25mg, once a day. But gives me headache and sick feeling all the time. Friend, who also has PN, went to a holistic specialist and is now on some sort of cayanne (sp) tablet. Says it helps. Have heard that Alpha Lipoic Acid also helps. |
| Name: | Denise D Hadley |
| E-mail address: | Denisedhadley@aol.com |
| Comments: | I been reading the entire net all evening and even made a couple of online friends by emailing a few.
It took that long to get the courage to actually write something in the sign the dream book. I am in so much pain and burning at this very moment and i have taken my pain meds 400mg Neurontin and 20mg of Kadian which is morphing at 9pm and its now 1130pm and even my pn bracelet hurts me. I was dx pn earlier this year and in the past month it has spread to my entire body. I cannot believe something i never ever heard of is all mine and really it is so painful and so puzzling to me at times. I am 47 yrs old and have not worked in a year. Now to walk is a goal for the day. I sound pitiful tonite i am sorry but the pain really gets to me and my family is sometimes so puzzled by me describing it that they don't believe it is really happening. I thank god for each day I am alive and I thank him for not giving this disease to my son who also has low b12. I am going to fight this disease cause maybe they will find someway of beating it so Robert and knowone else will have to suffer like this. god bless all of u denise |
| Name: | denise d hadley |
| E-mail address: | denisedhadley@aol.com |
| Comments: | I would like to join this association and be a part of support and give support and learn cause i suffer with pn. |
| Name: | Robyn |
| E-mail address: | milnjel@cox.net |
| Comments: | Hi Win and All,
I have my story listed here in the PN Stories section but wanted to sign the book too. :o) Someone might read this who hasn't read my story. There's hope for all of us but I didn't know there would ever be a chance of getting rid of my PN. I'm 52, have had idiopathic PN for almost 3 years now, and was told by several specialists that it was permanent and irreversable. Pretty strange since they didn't know what was causing it. One thing we all need to remember is that PN is a 'symptom'! As it turns out I just found out 2 months ago that I most likely have to have a disc removed from my cervical spine. There was damage and scar tissue causing pressure on the nerves in my spine which has been causing my PN symptoms. I had a severe whiplash when I was in my early 20's and that may have been the cause. I see the Neurosurgeon for the first time in 3 more days! I would urge anyone with idiopathic PN to please pressure your drs into tests and more tests! Something is causing it! I would definitely have spinal xrays for starters. For almost 3 years no one bothered to check my spine even tho I was having horrendous muscle spasms in my back and unbearable pain in my legs...the feet we all know about! I'll add an update to my story when I find out if the surgery is an option...I'm praying for it! An end to this nightmare of pain would be like being born again.. My best to all of you! Robyn :o) |
| URL: | http://www.geocities.com/milnjel1/index.html |
| Name: | Winston Hamby |
| E-mail address: | win@winoverpn.com |
| Comments: | A test to check operation of this feature.. |
| Name: | GEORGE |
| E-mail address: | workxforu2002@yahoo.com |
| Comments: | I have recently begun to have the tingling in my feet, and if air is streamed over my hands, they go numb.
Have been having luck with natural remedies and supplements. as I begin my log, will keep you posted on successes and /or news. If you go the supplement route, find a good nutritionist - worth their weight in gold. |
| URL: | http://www.winoverpn.com |
| Name: | Aziz Shaibani |
| E-mail address: | ataher@aol.com |
| URL: | http://www.winoverpn.com |
| Name: | Jana Colver |
| Comments: | This is a nice site for support. I would recommend that anyone suffering from PN, especially idiopathic (when they don't know the cause) give a small donation to a the Jack Miller Center for peripheral neuropathy, which is looking for a cure for PN. They are one of the first organizations searching for a cure for idiopathic PN, along w/ finding cures for other kinds of PN. They need funding, and the more support we give, perhaps the greater the chance for finding a cure. Their website is:
http://peripheralneuropathy.bsd.uchicago.edu/ |
| URL: | http://www.winoverpn.com |
| Name: | Bernard C Nunley |
| E-mail address: | bernie935@aol.com |
| Comments: | I've had PN for about 2 years, just looking around to see what is available. Started looking for a 'good' neurologist who won't tell me there is nothing more that can be done. We checked all your blood Chemistry and everything is good.Your signs are all good, it is pure 'idiopathic'. If they don't know what caused it, there is nothing to treat.I'm in an H M O, a pretty good one so far and they are good so far about sending me out to specialists. That is what I should be doing now. Thanks, Bye |
| URL: | http://www.winoverpn.com |
| Name: | Denise Steiner |
| E-mail address: | rsteiner@pioneer-net.com |
| URL: | http://www.winoverpn.com |
| Name: | donna |
| E-mail address: | dona@tricomonline.net |
| Comments: | Hello Everyone-
Came across this site trying to get info on PN. I enjoyed the site very much. Jusr recently found out I have PN. Will be nice to talk with others who know, understand, and believe in what you are going through. God Bless all of you. Winston, thank you for your site. Donna |
| Name: | connie coristin |
| E-mail address: | conniegayle@webtv.net |
| Name: | Ann |
| E-mail address: | asmith5241@aol.com |
| Comments: | Hi. My name is Ann. Diagnosed with PN in April. Mine is an ideopathic small fiber sensory neuopathy. Delighted to have found this site and read about others with PN. |
| Name: | Anne |
| E-mail address: | twofishinanich@peoplepc.com |
| Name: | SISSY |
| E-mail address: | SISSYGIR@WEBTV.NET |
| Comments: | I REALLY ENJOY READING YOUR DREAMBOOK ALSO ADDING DID YOU READ MY MESSAGES OH NO I WROTE TO THEIR OWN BOX BUT I'M GOING TO TRY AND MAKE ME A DREAMBOOK OR AN ADDRESS BOOK MEN / WOMEN TO WRITE TO HERE AND ABROAD....WELLL FEEL FREE TO MAIL ME WHEN YOU LIKE I LIVE IN THE DALLAS AREA WHICH IS ONLY ABOUT 2 HOURS FROM HOUSTON. BEEN THERE TWICE. HOT!! EACH TIME. THANK YOU FOR LISTENING
SISSY |
| URL: | http:// |
| Name: | Lawanna Lott |
| Comments: | Win,
Your site is really looking good. For those who don't know me, I have had PN for about 3 years. I've seen lots of friends names on the dreambook here that bring back lots of good memeories of very special people. Lawanna |
| URL: | http://communities.msn.com/PNPARTNERS |
| Name: | judie |
| E-mail address: | mimjag001@aol.com |
| Comments: | hi i am 62 year old female that has been suffering from this for 20+ years now it is now moving up into my back and hands the doctor has me on darvocets and celebrex i am wanting anyone out there to give me more info on different types of meds that can help me through this thank you judie |
| Name: | Bruce |
| E-mail address: | brfnewsman@earthlink.net |
| Comments: | Hello
I also have Pn...and am taking now 900 mg neurontin..sometimes i have to stop working and move away..I am going to see if there issomething for the circulation..and I inquired about SSD...to see if meds do not work..am I qualified..I was heavy..now I am losing weight...You';d think thin people don;t get illnesses..I try to deal with it./.but we are all going to die some day |
| Name: | Mo |
| E-mail address: | mobridges@yahoo.com |
| Comments: | Hi, My name is Maureen. AKA ~Mo. I have an illness called Porphyria and I am having one of the common symptoms/problems of this disease. I'm having very BAD nerve pain on my hands. It feels like someone "scrubbed" them with sand paper. It is HORRIBLE and I don't know how much more I can take. Does anyone use anything natural??? I don't like pain meds and I would welcome any suggestions. I am 48 yrs. old and live in Arizona. Thanks and Good Wishes.
~Mo |
| Name: | RONALD DYE |
| E-mail address: | ADVANCEINSURANCE@MGCI.COM |
| Comments: | HI I HAVE BEEN DIAGNOISTED WITH PN TWO YEARS NOW. DONE ALL THE BLOOD TEST, MRI, XRAY, NERVE TESTS ETC. TAKE 600MG NUEROTIN
4 TIME DAY WITH 50MG ALTRAM AT NIGHT. HAVE BEEN RECOMENDED TO TRY PLATAL FOR CIRCULATION, 100MG TWICE A DAY. HAS ANYONE HAD ANY SUCCESS WITH THESE. ANY HELP WOULD BE GREAT. |
| Name: | Winston Hamby |
| E-mail address: | win@winoverpn.com |
| Comments: | A test routine... |
| URL: | http://www.winoverpn.com |
| Name: | lady |
| E-mail address: | ladyflyaway@aol.com |
| Comments: | After 2 months of misery and test after test,I have been dx'd with PN. After months of being told I may have MS I now have to face more tests to see why I have PN. The only thing I really know about this is that at 47 I am too young to be debilitated like I am. I can hardly walk and I have so much pain all the time. I am taking 800mg Neurontin three times a day. It seems to help some. Have a repeat EMG coming up and yesterday they took 13 tubes of blood to look for possible causes. How do you deal with this. |
| Name: | lorri happy |
| E-mail address: | lorrihappy @gbis.com |
| Comments: | I am 43 yrs old i have pn. I take neurontin 800mg 6-8 times a day. I have no energy,and all I want to do is sleep, but no one understands. my family thinks Im lazy. I have mood swings and I cry alot when Im by myself.I am glad there are other people who have the same problems ,and Im not imagining these symtoms. |
| Name: | Cecile Shamis |
| E-mail address: | cile_59@yahoo.com |
| Comments: | I have enjoyed the new friends I've made here and learning about other medications and such. I have PN all over, not just in my feet, and I have suffered for over 10 years. With the combination of meds I am currently taking it makes the episodes of pain happen less often and when they do, the pain is milder and doesn't seem to last as long. Other days I burn all over all the time. There is also a compounded cream that I use that helps too. Feel free to email me if you like. I live way down South in Mississippi, ya'll! |
| Name: | Cecile Shamis |
| Name: | Rina |
| E-mail address: | advisor@alpacas-alpacas.org |
| Comments: | Very appealing site. Fascinating. |
| URL: | http://www.alpacas-alpacas.org |
| Name: | Jo |
| E-mail address: | jstanich@att.net |
| Name: | Alice Day |
| E-mail address: | aliceaday@hotmail.com |
| Comments: | I have CIDP This is all new for me ,I'm 52years old and on disabilty,never thought I would be delt something that I could not handle. But this is really testing me !!! I wear a pain patch and have meds for break through pain.I just had a five day treatment of IVIg,then should have one a month for six months.God I prey that this is the answer!God Bless everyone! |
| Name: | Brian Hatcher |
| E-mail address: | b-jhatcher@worldnet.att.net |
| URL: | Hi everyone I am 33 years old and I live in Ga. I have just been diagnosed with PN and to tell you the truth I am pretty excited about it, Let me explain , For years I have had problems and I have spent alot of money on Doctors and have been to a lot of different clinics . For most of these years only my wife and mother actually would believe all of my complaints and symptons. I now for the first time believe in my diagnosis because of reading about all of the PN sufferers on the web. and researching this disease along with listening to my new doctor Yeah , I still live in pain and I get depressed but I used to tell my wife all I want to know is what do I have and now I feel vindacated to all of those who did not believe in me.It's tough but i am going to keep on trying to get by. Thanks for listening and if anyone has any tips about medicine or any other good hints or you just want to talk about PN please feel free to e-mail me........Thanks, Brian |
| Name: | Val |
| E-mail address: | shawlewis@shaw.ca |
| Comments: | Hi: I am a senior citizen and live in Calgary, Alberta, Canada. I just came across your excellent web page while seeking information on PN. It is wonderful that there are support groups such as yours available on the web site for PNers. I was diagnosed with PN in the latter part of 1999. I have been taking Neurontin, 300 mg. at night for the last two and a half years with not too much help. I can relate very well to the symptoms that many of the readers talk about with their feet, hands and arms. This disease is really a "bummer" and puts a dampner on daily activities and travel that one was looking forward to doing when retirement came around. With the help of my neurologist we are hoping to start a support group here in the city. If anyone would like to contact me in this regard, I can be reached at my e-mail address: shawlewis@shaw.ca.
Keep up the good work and Good Luck with all your endeavours. Make it a good day for yourself. Val |
| Name: | joe |
| E-mail address: | polyjoee@aol.com |
| Comments: | HI EVERYONE HERE !
I HAVE HAD PROGRESSIVE PERIPHERAL POLYNEUROPATHY OF UNKNOWN ETIOLOGY FOR 13 + YEARS AND COUNTING AND NOBODY KNOWS WHAT TO DO ABOUT IT, AND WITH NO CURE IN SITE,DITTO . |
| Name: | Henry Swanson |
| E-mail address: | golfhank@webtv.net |
| Comments: | I just discovered your site while looking for info on PN.I have had it
for 5 months and have pain and numbness in my feet.I am taking Neurontin 600mm 3 times a day and that helps but the numbness seems to be spreading fast. Does anyone out there have a simular condition? Hank Swanson |
| Name: | ed barnes |
| E-mail address: | ebarnes@carolina.rr.com |
| Comments: | I am looking for anything to give relief to my wife for p.n., primarily affecting her feet. This websight is great. |
| Name: | Nahed Stroud |
| E-mail address: | nahedstroud@aol.com |
| Name: | Nahed Stroud |
| E-mail address: | nahedstroud |
| Name: | Celine Womack |
| E-mail address: | cwomack@hal-pc.org |
| Comments: | I have learned a lot from the support group. Since I can't always leave my husband, I have not attended as many programs as I would have liked. |