new help for nerve damage

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Hi this is my 4th message on this board, I am getting so depressed and cry everyday (unlike me to do so) I an having a real hard time handeling the pain, I have seen and a new Dr and he at least listens to me, He sent me in to have a cat scan and I will have the result tomorrow I am scared, I was not told of all the risks of thr however Im sure I signed that form, M y problem is nerve damage and a drop foot Am unable to walk and am on alot of narcotics for the pain, I just took some so please excuse any typing errors I fell the other day as I have numbess in part of my foot ankle and leg, Im not sure if I injured myself or just sprained No one seems to have my problems so I keep on searching, Now I have been told it may be peronal damage and it may be permanent,I cant afford the neurontin that seem to help and want to do anything I can to help myself like excercise but dont know how. If I start pt they may help right" Just wante d to vent a littlee and see if anyone has the same problem good night all and I wish you all a pain free night

-- Diane from Seattle (aladin806@peoplepc.comd), February 23, 2004

Answers

Hi, Diane, I don't usually post on this board I was just looking at some of the discussion threads and I saw yours. I am so sorry you are in pain, I know that pain all to well!

The pain that you describe is from an illness called "NEUROPATHY" diabetics get is and some patients with MS get it. When I first got it 2 years ago. It began in both of my feet. I had never experienced such pain, it was as if someone had set my feet on fire and then poured acid on my feet. I could not sleep when I first got it, I would cry and cry and I could not even have blankets touch my feet.

Neurontin helped me but I had to take the highest dose allowed. I have had it for 2 years, it has moved from my feet to my hips and lower back. Here is some good news, it seems to come in waves and the pain will lesson. So hold on!

The neurontin does not work for me but my dr. put me on B-12 shots, which really, really helps and it is far cheaper than neurontin. Apparently the B-12 wraps around the nerve endings.

Do a search on the internet under "B-1

-- Denise (revdrogers@netscape.net), February 29, 2004.


thank you for the encouragement, I will try the vitamin b 12, I have heard good things about it. Hope you are having a good day Diane

-- Diane from Seattle (aladin806@peoplepc.com), February 29, 2004.

I DO NOT USUALLY RESPOND TO THESE TYPES OF CHAT/POSTINGS BOARDS. I just happened on to your email because I was looking for free/low cost assistance from the manufacturer or any other assistance that I might be able to get for a friend of mine. Here is my response to your message:

I am sorry to hear about your pain and I know of that kind of pain. Twelve years ago I was diagnosed with degenerative disc desease which is the discs in the spine disappearing. I had fallen down because my right leg just gave out on me totally. I now have numbness in the outer side of my right foot/leg and thigh, I have herneated discs in the cervicle (neck) which has caused numbness in the right hand/arm/shoulder and thoracic (just below the shoulder blade area of the spine) area which I get sharp clamping pain every once in a while. Keep in mind that each person reacts differently with each type of medications, what might work for me may not work for you. I have had injections into the spine with no help and yet there are those that it works wonderfully. I have tried several types of medications which have worked on others and they just don't for me. I am using neurontin and it has help a little in the pain area and that is all that the medication is supposed to do though according to what I have read. It will not repair the damage, nothing will. I am NOT a HOLY ROLLER, with that being said what ever your beliefs are turn to them for strength because it can help you get through this too. You might want to look for support groups in the Seattle area, having lived in Seattle I know that they have many types of support groups. I too am to start PT this month just to try to find some kind of exercises that I can do to strengthen my body as much as possible so that I can deal with my issues.

-- J. I. (vacavillelbueyes@aol.com), April 09, 2004.


Hi Diane so happy to meet you and to read others are suffering like myself!! oh my lord,, let me tell you alittle of myself,, i am a 34 year old mother of two,, WAS a very active person,, coached my daughters hockey team,, danced for the boston ballet co, for 9 years coached cheerleading, enough activity to say i was active, well one day during a hockey practice i was gripped with pain like i had never felt before in both my feet, more in my left,, so much that i thought that they were broken,, well that was a year an a half ago,, well that started the endless trial and errors of celebrex, motrin, neurontin, every other non- narcotic med they could plus depression meds,, cause cramping my active life sure did depress me as well, but on top of that those type of meds do also work in the brain to control pain,, well next comes on the podiatrist,, endless,, shots,, differsnt mixtures of steriods,, ( mind you finally my primary did put me on percocet) any ways the shots last literally a day,, nerva damage to say the least,, the other evening i was in sooooo much pain,, i called the podiatrist happened to be on vacation,, so i called my primary,, thot maybe she could just give it a shot,, usually a steriod,, well my usual doc was not in so i saw the doc that was covering he finally gave it a name,, which i saw posted by some one else out there but he said i have not one but several,, neuraltomas,, tumors of nerves,, that have gotten all bunched up and enflamed,, heres the beauty,, narcotics dont help nerves,, they cloud your mind temporarily (they best not take mine,, its what gets me walking through the day til they fix it hahah) no really though,, but he said for me a caused could have been of course dancers feet and the glorious 4in heels i wore all through high school in the 80's , pointed tipped shoes major culprit,, inproperly fitted shoes as a child. he refered me to another podiatrist if this first guy whos been seeing me almost a year hasnt helped well i need another doc!!! agree.. soo i'mm looking forward to movin ahead please email me love to hear from you so much more to say and can answer so much i had a little minot surgery on it did nothing just ask i know a few things problem was was the guy i was seeing never NAMED it.. now i know.. hope to hear from you thanks Karin

-- karin (kayberrybear@yahoo.com), July 23, 2004.

Hi everybody, I am so disgusted with doctors, I have taken vaccines about 4 months ago, and now I keep having symptoms that I'm sure is related to nerve damage from those immunizations I had to take for immigration in order to become a citizen. Is anyone here familiar with that? I am 25 yrs old, I have headaches, chest pain, back pain, tmj sympthoms, my veins and nerves got thick and blue and purple and I shake sometimes. Doctors tell me they don't see anything wrong and also tell me that vaccines does not cause damages. What the f@#@!

-- Adriana Jansen (adri_jansen@hotmail.com), August 02, 2004.


Guys, don't ever take vaccines, please! Doctors will tell you that doesn't cause damage, please don't believe they are liers and they don't give a shit about it(excuse my french)yes, I am really mad cause its not fair the way they lie to the public, if I am an adult and I have those symptoms imagine young children....I am so mad!

-- Adriana Jansen (adri_jansen@hotmail.com), August 02, 2004.

Hi, my name is Kim, I had left total hip replacement in Jan.04, surgery went ok but wasn't able to feel my foot after. The doc's and nurses said that it was probably from the anestesia and would more than likely go away when it wore off.Went home with a afo brace. The following months I had a scan for blood clot and it came back negative, was never so scared in my life. Then a Mri, also went to a neurologist and a neuorsurgeon about the numbness and drop foot, also had 2 nerve conduction tests, OUCH They all told me about the same thing, wait it out, probably will come back in about a year or so. The sad part of it was I was so depressed and still am but not as bad. Went back to work after being home 3 months and that did help a little. Was glad to get off the walker and the cane, but the brace drives me nuts, and yes I have tried to walk without it and fell flat on my face!They say that the nerve test will be re-done in Sept. and it will determine if any feeling has returned. Duh, like I wont know when that happens!I don't have the pain that you are talking about, its more the feeling that I have no control and my foot and left part of my leg is asleep all of the time!Was on the neurontin for a while and did't do much for me.I try to do my exercises at home that the pt gave me and ride a stationary bike at the gym when I can, but never seems like enough. Do you wear a brace for the drop Foot? any one else?What surgery did you have? Let me know, you are not alone. I thought that I was the only one! Kim

-- kimvanantwerp@insightbb.com (kimvanantwerp@insightbb.com), August 04, 2004.

Hi Diane. Sorry about the misery and pain that injury has caused. I sure hope that you on your way to recovery by now.

I also have foot drop as a result of knee injury in January 2004. After much physio there seems to be very little improvement. I do not experience the kind of pain that you describebut the condition has taken a good chunk of my self esteem.

I only hope this gives you the strength to fight on if there is still need to do so coz you are not alone.

This one comes all the way from Africa.

-- Lucky (elgumboh@yahoo.com), September 09, 2004.


HI IM SORRY TO HEAR ABOUT YOUR PAIN. I CAN UNDERSTAND IT THOUGH. I HAD ABCK FUSION SURGERY LAST MONTH ON MY L4 L5 DISCS. WHEN I CAME TO I WAS IN TERRIBLE PAIN. THE DR. HAD SCREWED THE HARDWARE OUT OF MY BONE INTO MY SCIATIC NERVE. AFTER AN MRI HE REALIZED HIS MISTAKE. A FEW DAYS LATER I WAS BACK IN THE SURGERY ROOM. THE DR. WANTED TO KEEP MOVING THE SCREW AROUND UNTIL HE GOT IT RIGHT. THANK GOD ANOTHER DR. STEPPED IN AND SAID THAT THE BEST THING TO DO WOULD BE TO REMOVE ALL OF THE HARDWARE ON THE RIGHT SIDE. WHEN I CAME TO AFTER THE SECOND SURGERY I HAD DROP FOOT. I WEAR AN AFO BRACE IN MY SHOE, I GO TO PT 3 TIMES A WEEK AND NOTHING SEEMS TO HELP THE DROP FOOT. I FEEL ASHAMED, EMBARRASSED TO EVEN WALK IN PUBLIC,ETC. ETC. ETC. I HAVE TWO YOUNG CHILDREN ALSO. I FEEL BAD FOR THEM TO HAVE A MOTHER THAT CAN HARDLY PLAY WITH THEM AT ALL. SORRY TO MAKE YOU EVEN MORE DEPRESSED. I JUST WANTED YOU TO KNOW THAT YOU ARE NOT ALONE. IT ALSO MAKES ME FEEL BETTER THAT I AM NOT ALONE EITHER.

-- MELISSA (MSMOOODE@AOL.COM), November 03, 2004.

I know what you mean about the constant pain. I stepped in a hole at work almost 2 yrs ago. My left side went numb fron the waist down a few days later. I had physio and it did help some of the buttock numbness but everything else has stayed, she also says nerve damage. Likely sciatica pinched, didn't stay pinched but did nerve damge. My feet are so bad that it hurts to walk, my left foot hurts all the time, bare feet, sock feet, shoes on or off. Only my family doctor seems to understand and is sure it is nerve damage. A foot doctor has said nothing can be done because the numbness and tingling is so deep in the joints and suspects nerve damage. She has made a pair of inserts but they only give me a few minutes and then the pain is back. I have been told not to walk in my bare feet or sock feet. This numbness is also in the pelvic area including the family jewels(as it were), also the rectum. I am in constant discomfort and have to adjust myself a lot. Most clothes bother me and most nights I can't stand the bedding touching me and end up falling asleep sitting up from shear exhaustion. So called specialists seem to think that if you can move then go to work. I have been a carpenter for thirty years and can't wear safety equipment. There dosen't seem to be enough research on nerve damage, or doctors don't have time to find out. Through all this I ended up on welfare, pretty good after working for the Ontario government. Have been basically called a gold bricker and just wanted to go on long term. I have two children, the youngest was 3 when this happened. I have worked for years with ostioarthritis, bursitis and fluid on both knees and shoulders, but if you can't wear the appropiate clothes than you can't work. Thanks for letting me vent. Garnet

-- Garnet Lawson (service_man_893@hotmail.com), November 28, 2004.


Hi Diana, How are you?so sorry about your pain.I to have a nerve damage on my shoulder(brochial plexus)and my hand ,I haven't close my hand all the way for almost a year .I'm also taking neurontin .I to fell the same as u are ,yes sometimes I cried but I dont want to anybody know. this is the first time I'v seen this home page. sometimes it's good to talk to someone that has similar pain ,they understand one another. How long have been in pain ? If you dont mind me asking. If you want to email me ,anytime. Takecare, Loreta

-- Loreta (Loreta@58cox.net), February 14, 2005.

Wow...was doing research on DDD as I have had it for at least 15 years and know bery well what constant pain you have...for me it comes and goes tho as far as intensity but in the last six months it has gotten so bad I am now hoping to get a disc replacement. But enough about that. I am writing concerning drop foot.....I had a v ery bad case of it about nine years ago and after screwing around with several almost -a -doctors I went to P.T. and they did this electrical stimulation thing 3 times a week for 3 weeks to strengthen muscles and I havce not had it since...hope this helps...good luck Larry Boord Troy NY

-- Larry Boord (kydlarry@yahoo.com), March 10, 2005.

Hi, I'm hope today is a less painful day for everyone. Lets excentuate the positive. I have DDD too. In April I am scheduled for multiple disc fusion. C-4,5 C-5,6 C-6,7. I have intermitent pain burning and numbness down mostly my right side but also the left side and in between my shoulder blades. I was in a car accident and it hurts. I was told by a nurse today that if the surgery goes wrong I could become a parapalegic. I was mortified to say the least. I dont know what I should do. I know pain meds help. But do I want to be on pain meds every day or take the chance to help it with surgery.

-- Ann Skalon (amas122757@aol.com), March 12, 2005.

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