mimi214nc
04-13-2008, 12:38 AM
I've had neuropathy in my feet for about 5 yrs now. The doctor's have had me on every medicine I can think of all of which has either stopped working after awhile or I had bad side effect's from it. The neuropathy is going to my hand's now I'm afraid as I am experiencing the same sympthom's as I did when it started in my feet.....tingling itching ect... I can only take ultram for the pain because I am allergic to everything, which really is bad for someone in my condition. My family all feel bad for me but as we all know unless you know the pain of neuropathy you cannot even try to describe it.So I am sorta stuck here with no help in sight. If anyone knows of any new drug's please let me know.I have taken ..Neurontin, Lycrica, Topamax, Quiene, and so much more then I can think of now. I am currently trying the B12 solution but so far nothing..Thank's for anything you can tell me and thank's so much for being here and knowing how I feel. :angel:
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cream9518
04-13-2008, 01:24 PM
Dear Mimi, My heart goes out to you and I understand your pain. I have been diagnosed with PN a couple of years ago. Started with burning feet and now I have burning and numbness from ankles up my legs. Dont know what I will do if it starts in my hands. I am an artist who does water color drawings and it scares me if I will have a problem with that. It is hard to explain to people when I tell them about the pain you have with PN. There are times when I am walking and have no feeling in my feet. The neuro thought that Lyrica would help but so far it has not. Tried all the same medications that you have taken. He took me off a high dose of Lyrica and put me on 200mgs a day and told me to come back in four months. What next? I guess there is really no cure for PN.
I have a degenerated cervical disc and both my ortho and neuro docs said that it is not the cause. Guess just have to learn to live with this.
I have a degenerated cervical disc and both my ortho and neuro docs said that it is not the cause. Guess just have to learn to live with this.
Aussie100
04-15-2008, 01:36 AM
Hello Mimi, when i was using Tramadol [ ultram same thing] but i noticed after a while, i built up a tolerance for that med, i was on 2 x 300 mg slow release Tramadol daily, seeing i couldn't take any of the other strong meds the only way
i found relief was if i backed off to 200 mg twice a day for about a week, put up with it all :(, then went back up to the 300 mg it worked again for me every time.
I also took Endep 150 mg at night and 25 mg in the mornings, that helped the burning.
With b12 supplementation, its best to take a good quality multi B every day as well, as the b12 needs the other B vitamins to make it work better, and if your taking the best form of b12 [methylcobalamin] it is best to take it separately on an empty stomache, for better absorption.
Just remembered, i know one guy that couldn't get any relief from the typical drugs for PN, but has found great relief using the fentanyl patch.
I really hope you can find some relief, best wishes :)
i found relief was if i backed off to 200 mg twice a day for about a week, put up with it all :(, then went back up to the 300 mg it worked again for me every time.
I also took Endep 150 mg at night and 25 mg in the mornings, that helped the burning.
With b12 supplementation, its best to take a good quality multi B every day as well, as the b12 needs the other B vitamins to make it work better, and if your taking the best form of b12 [methylcobalamin] it is best to take it separately on an empty stomache, for better absorption.
Just remembered, i know one guy that couldn't get any relief from the typical drugs for PN, but has found great relief using the fentanyl patch.
I really hope you can find some relief, best wishes :)
Bluesky4041
04-16-2008, 10:12 AM
I've had neuropathy in my feet for about 5 yrs now. The doctor's have had me on every medicine I can think of all of which has either stopped working after awhile or I had bad side effect's from it. The neuropathy is going to my hand's now I'm afraid as I am experiencing the same sympthom's as I did when it started in my feet.....tingling itching ect... I can only take ultram for the pain because I am allergic to everything, which really is bad for someone in my condition. My family all feel bad for me but as we all know unless you know the pain of neuropathy you cannot even try to describe it.So I am sorta stuck here with no help in sight. If anyone knows of any new drug's please let me know.I have taken ..Neurontin, Lycrica, Topamax, Quiene, and so much more then I can think of now. I am currently trying the B12 solution but so far nothing..Thank's for anything you can tell me and thank's so much for being here and knowing how I feel. :angel:
Bluesky4041
04-16-2008, 10:55 AM
I have neuropathy, started in my feet over two years ago and moving up my legs. Now it's moving into my hands. Doctors don't know anything. I tried Lyrica and all the other crap the doctors want to shove down your throat to see if anything works. But they don't even know what it is caused from. I suspect it's environmental, GMO's or may be DU! We are picking up traces of DU world wide now.
The only relief I ever got so far is from Hydrocodone. Two, 10mg tabs per day and I felt better than ever. I could do everything I use to do but even better and longer. It may make you a little dizzy at first but once you get use to them they WORK! Well they worked for me for a year, at least until I lost my Ins and my new doctor is paranoid and said no to scheduled II narcotics. Unfortunately doctors are afraid of the DEA sending them to prison forever! After the DEA terrorist wipes out the doctors practice, then they go after the doc’s family, bank accounts and homes. I don't blame the doctors; it's the government and DEA. We are no longer a free nation as you may have figured out by now.
They (the government)could care less about Americans and their needs. Mexico may be where I have to live to get medical treatment because my INS is now gone.
It's cheap and they care more about your health in Mexico than in America.
In America, it's every man for himself and getting worse by the day.
I don't think I can live this way much longer, so if I can't get to Mexico
I'll.... :( Well, I believe it will soon be an epidemic, so be prepared!
The only relief I ever got so far is from Hydrocodone. Two, 10mg tabs per day and I felt better than ever. I could do everything I use to do but even better and longer. It may make you a little dizzy at first but once you get use to them they WORK! Well they worked for me for a year, at least until I lost my Ins and my new doctor is paranoid and said no to scheduled II narcotics. Unfortunately doctors are afraid of the DEA sending them to prison forever! After the DEA terrorist wipes out the doctors practice, then they go after the doc’s family, bank accounts and homes. I don't blame the doctors; it's the government and DEA. We are no longer a free nation as you may have figured out by now.
They (the government)could care less about Americans and their needs. Mexico may be where I have to live to get medical treatment because my INS is now gone.
It's cheap and they care more about your health in Mexico than in America.
In America, it's every man for himself and getting worse by the day.
I don't think I can live this way much longer, so if I can't get to Mexico
I'll.... :( Well, I believe it will soon be an epidemic, so be prepared!
mimi214nc
04-16-2008, 04:30 PM
I can't take Hydrocodone because I'm allergic to it. Has anyone used the Fentanyl Patch? I've never heard of it before and was wondering if it was any good for the pain . Also I don't have insurance either but I do have a wonderful Foot Doctor who is willing to help me any way he can. He even adjust his payment's for me in office visit's and for my many surgeries I've had. I know we all feel like there is no hope but I gotta believe that someday , someone will find something to help all of us effected by this disease.Until then I guess we keep trying to find way's of coping and hoping it does't get any worse!:angel:
Aussie100
04-16-2008, 06:24 PM
mimi, that guy i refered to told me that before trying the Fen' patches his pain levels were around 9 out of 10, even with strong narcotics, now he lives a pretty normal life with pain levels around 2 - 3, he has idiopathic pn for many years, apparantly they come in differant strengths and they tilter the strengths up until the patient feels the most benefit.
mimi214nc
04-16-2008, 08:41 PM
Aussie . Is it safe? I seen where there were some death's contributed to using this patch? I know everything has some risks with it but still if it has caused death for some people then I'm not sure if I would feel to comfortable trying it. I just want to feel normal again!!! Also do you have trouble wearing shoes? All I can wear is Crocs and I really wish I could find some kind of shoe that would be comfortable. I found a website for New Balance for people wih Neuropathy but I hate paying that much for shoes without knowing if they really will be comfortable. I have bought so many shoes that i could start my own shoe store! All of them kill my feet now and I'm at my wit's end trying to find some I can wear. Any suggestion's from anyone?:confused:
mimi214nc
04-16-2008, 10:28 PM
cream, Sorry the Lyrica isn't helping you. It did help me at first. I could actually wear sandals and my feet didn't hurt constantly. But it was over as soon as it started it seemed! I really get so frustrated when it comes to this disease. I even find myself being evnious of people that can go to the store buy whatever shoes they want , stick them on their feet and go on their merry little way!I miss that! I don't know if you have the same problem but my feet actually feel as though they swell in most shoes I try to wear. So now I wear Crocs. They are about the only thing I can stand on my feet other then my bedroom shoes. I am not Diabetic and my neuropathy has never been explained as to how I came to have it. My kidney doctor said it looked like I had some disc ruptured but I have never been diagnosed as having anything like that. Maybe that is where it came from . I haven't the faintest idea. Sorry to ramble on like this...just hurting real bad tonight and I see yet another sleepless night. Thank's for being here . I promise to be a little less wordy next time!:)
Aussie100
04-17-2008, 04:22 AM
Aussie . Is it safe? I seen where there were some death's contributed to using this patch? I know everything has some risks with it but still if it has caused death for some people then I'm not sure if I would feel to comfortable trying it. I just want to feel normal again!!! Also do you have trouble wearing shoes? All I can wear is Crocs and I really wish I could find some kind of shoe that would be comfortable. I found a website for New Balance for people wih Neuropathy but I hate paying that much for shoes without knowing if they really will be comfortable. I have bought so many shoes that i could start my own shoe store! All of them kill my feet now and I'm at my wit's end trying to find some I can wear. Any suggestion's from anyone?:confused:
Inappropriate use of medications can be life threating, all warnings should be not be taken lightly & strictly used only as prescribed as with any narcotic.
I do hope you can find something that can help your pain, nerve pain is the pits.
Aussie :)
Inappropriate use of medications can be life threating, all warnings should be not be taken lightly & strictly used only as prescribed as with any narcotic.
I do hope you can find something that can help your pain, nerve pain is the pits.
Aussie :)
Aussie100
04-17-2008, 06:14 PM
Sorry mimi, i didn't answer your foot ware question, i couldn't wear anything but thongs on my feet for over 3 years after the onset of PN, it was just to painfull.
These days i can wear boots, shoes anything doesn't worry me at all, as the cause of my PN was found by a PN expert and i have been healing ever since to 99% full recovery, thank god :)
These days i can wear boots, shoes anything doesn't worry me at all, as the cause of my PN was found by a PN expert and i have been healing ever since to 99% full recovery, thank god :)
cream9518
04-17-2008, 06:32 PM
Hi Mimi, I am having a bad day today. Ankles are numb and burning. Rubbed a little capsazin on them but they are still the same. I will take some percocet which will take my mind off my aches and continue making dinner. I looked up the croc shoe and maybe will get a pair. Hang on there Mimi and remember there are so many others like us and maybe someone will find the cause of this.
mimi214nc
04-18-2008, 03:29 PM
so Aussie there is a cure for this? I was always told there was no cure just med's to help with the pain and to help you cope with it.If someone has a cure then please let me know.If I could be cured from this I would be the happiest person in the world. I have aways been afraid it would just get worst and maybe even end up putting me in a wheelchair.So any information would be appreciated. Thank's and I also know what works for some may not work for other's, but you never know until you try. Also ever heard of cysosurgery for neuropathy? A doctor in Tampa does this and says it has a pretty high success rate. I've been thinking about calling up my Doctor and see if he knows anything about it.
mimi214nc
04-18-2008, 03:57 PM
Hi Cream, Sorry you are having such a bad day! I hope you find some relief soon. When you have pain like that it takes away from things you normally do and enjoy..My grandson want's "Mimi" to run and play with him and I find that very hard to do most days but I still muddle through sometimes and run and play and cry from the pain later. {I would never let him see this though!} I figure I better do what I can now 'cause who knows what tomorrow brings. Well. take care Cream and I hope you feel better soon! Me I'm about 1/3 of my normal self today and for me that is having a very good day for a change!So Tee-Ball practice here I come!:wave:
Aussie100
04-18-2008, 07:18 PM
so Aussie there is a cure for this? I was always told there was no cure just med's to help with the pain and to help you cope with it.If someone has a cure then please let me know.If I could be cured from this I would be the happiest person in the world. I have aways been afraid it would just get worst and maybe even end up putting me in a wheelchair.So any information would be appreciated. Thank's and I also know what works for some may not work for other's, but you never know until you try. Also ever heard of cysosurgery for neuropathy? A doctor in Tampa does this and says it has a pretty high success rate. I've been thinking about calling up my Doctor and see if he knows anything about it.
mimi, it depends on what is causing the nerve damage, if the cause can be found and if it can be
rectified then yes there is hope for improvement, the healing process is a very slow process though and depends on how much damage there is to heal.
The general misconception of PN is that PN a disease itself, but this isn't really true, the continuing destruction of the peripheral nerves is caused by something else going wrong within that person, the nerve's don't just get damaged by themselves without a reason, although they know of over 200 known reasons for nerve damage unfortuanatley it is not always possible to find a cause, even with expert PN specialist's working for you, many PN patients still remain idiopathic unfortunately.
If you do an internet search for " Algorithm for the Evaluation of Peripheral Neuropathy " or similar you will get more of an idea to what i am talking about,
The Mayo clinic in the US has some good material to read, the more PN patients know about PN the better, you may even find some tests that have not been done yet, and then able to question your neuro to why haven't they covered that test yet, to many neuro's just do basic tests and then treat for pain managment, it is best to have a neuro that is a PN expert working for you, some neuro's i had when first getting pn were really hopeless, believe me and i use to have respect for the medical profession.
I have heard of cysosurgery were there freeze the nerve but i don't know enough about it to comment, i would really do my home work first though.
best of luck
Aussie :)
mimi, it depends on what is causing the nerve damage, if the cause can be found and if it can be
rectified then yes there is hope for improvement, the healing process is a very slow process though and depends on how much damage there is to heal.
The general misconception of PN is that PN a disease itself, but this isn't really true, the continuing destruction of the peripheral nerves is caused by something else going wrong within that person, the nerve's don't just get damaged by themselves without a reason, although they know of over 200 known reasons for nerve damage unfortuanatley it is not always possible to find a cause, even with expert PN specialist's working for you, many PN patients still remain idiopathic unfortunately.
If you do an internet search for " Algorithm for the Evaluation of Peripheral Neuropathy " or similar you will get more of an idea to what i am talking about,
The Mayo clinic in the US has some good material to read, the more PN patients know about PN the better, you may even find some tests that have not been done yet, and then able to question your neuro to why haven't they covered that test yet, to many neuro's just do basic tests and then treat for pain managment, it is best to have a neuro that is a PN expert working for you, some neuro's i had when first getting pn were really hopeless, believe me and i use to have respect for the medical profession.
I have heard of cysosurgery were there freeze the nerve but i don't know enough about it to comment, i would really do my home work first though.
best of luck
Aussie :)
CAROLYN000
04-19-2008, 02:34 PM
Sorry mimi, i didn't answer your foot ware question, i couldn't wear anything but thongs on my feet for over 3 years after the onset of PN, it was just to painfull.
These days i can wear boots, shoes anything doesn't worry me at all, as the cause of my PN was found by a PN expert and i have been healing ever since to 99% full recovery, thank god :)
AUSSIE:
Please tell us what the PN expert gave you that is responsible for 99% recovery. I am afraid I am going to end up in a wheelchair. Your
message gives me hope. I am desperate. How do I go about finding
a PN expert? Please explain the meds you took to heal your PN
These days i can wear boots, shoes anything doesn't worry me at all, as the cause of my PN was found by a PN expert and i have been healing ever since to 99% full recovery, thank god :)
AUSSIE:
Please tell us what the PN expert gave you that is responsible for 99% recovery. I am afraid I am going to end up in a wheelchair. Your
message gives me hope. I am desperate. How do I go about finding
a PN expert? Please explain the meds you took to heal your PN
Aussie100
04-19-2008, 06:25 PM
AUSSIE:
Please tell us what the PN expert gave you that is responsible for 99% recovery. I am afraid I am going to end up in a wheelchair. Your
message gives me hope. I am desperate. How do I go about finding
a PN expert? Please explain the meds you took to heal your PN
Hi Carolnood, he found the reason which was prediabetes, it was found through a glucose tolerance test, you do not have to be a full blown diabetic for years to get nerve damage as to many doctors believe, some doc's do a simple fasting glucose test which is not a good enough... the rest was up to me to change my lifestyle habits to reverse the prediabetic state, which i did through diet and exercise.
Because of increased urination with diabetes it causes massive losses of nutrients such as vitamins B-l, B-6 and B-12, and the minerals magnesium, zinc and chromium, all of these vitamins are needed for general nerve health.
The supplements i have been using are to cover the B vitamins, i just use a good quality multi B & b12 Methylcobalamin, also use the supplement Alpha lipioc acid, Gamma linolenic acid, Acetyl-l-carnitine, you may like to read up on these supplements doing independent internet searches with Peripheral Neuropathy typed in first then the name of the supplement.
There is no one magic pill that fixes PN straight away, it takes time for nerves to heal, firstly a cause must be found then addressed, once the nerves are in the right environment then nutritional supplements can help the healing process along , which most doctors are not savy to this.
I live in OZ, but i know the Mayo Clinic in the US has neuro's that are PN experts, but i must stipulate not all causes are found even with the pn experts working for you, i know some idiopathic PNer's have found some relief over time with proper supplement support, as mentioned above, it's best to inform your doctor before taking supplements with prescribed meds, eg - alpha lipioc acid can lower blood sugar levels and if one is taken Metformin for diabetes it could lower your blood sugars to much, which is dangerous.
Please tell us what the PN expert gave you that is responsible for 99% recovery. I am afraid I am going to end up in a wheelchair. Your
message gives me hope. I am desperate. How do I go about finding
a PN expert? Please explain the meds you took to heal your PN
Hi Carolnood, he found the reason which was prediabetes, it was found through a glucose tolerance test, you do not have to be a full blown diabetic for years to get nerve damage as to many doctors believe, some doc's do a simple fasting glucose test which is not a good enough... the rest was up to me to change my lifestyle habits to reverse the prediabetic state, which i did through diet and exercise.
Because of increased urination with diabetes it causes massive losses of nutrients such as vitamins B-l, B-6 and B-12, and the minerals magnesium, zinc and chromium, all of these vitamins are needed for general nerve health.
The supplements i have been using are to cover the B vitamins, i just use a good quality multi B & b12 Methylcobalamin, also use the supplement Alpha lipioc acid, Gamma linolenic acid, Acetyl-l-carnitine, you may like to read up on these supplements doing independent internet searches with Peripheral Neuropathy typed in first then the name of the supplement.
There is no one magic pill that fixes PN straight away, it takes time for nerves to heal, firstly a cause must be found then addressed, once the nerves are in the right environment then nutritional supplements can help the healing process along , which most doctors are not savy to this.
I live in OZ, but i know the Mayo Clinic in the US has neuro's that are PN experts, but i must stipulate not all causes are found even with the pn experts working for you, i know some idiopathic PNer's have found some relief over time with proper supplement support, as mentioned above, it's best to inform your doctor before taking supplements with prescribed meds, eg - alpha lipioc acid can lower blood sugar levels and if one is taken Metformin for diabetes it could lower your blood sugars to much, which is dangerous.
hotquad
04-22-2008, 09:57 PM
After having terrible neuropathic pain, from my navel to my toes, after my 11/78 car accident, which left me pazalyzed as C 6/7 quadriplegic, it wasn't until 1999 I was diagnosed w/ Syringomyelia. This causes a syrinx (cyst) to form inside the spinal canal and put pressure against the spinal cord. I had surgey after my FIRST MRI EVER in 1999 showed a huge syrinx from my skull down to the site of my spinal cord injury, where there is a substantial narrowning of the spinal canal, blocking the free flow of spinal fluid, which is what is believed to cause the formation of the syrinx. Therefore, until you have an MRI, which rues this out, don't let them tell you your degenerated cervical disc is not the cause. In my surgery, the syrinx was drained and a shunt inserted, which drains fluid build up down into my chest, to prevent the syrinx from re-inflating. So far, mauch better, but a very, very serious surgery.