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Old 08-05-2009, 05:55 PM #1
kokopup kokopup is offline
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Default Hi, I'm new to neurotalk

I'm here to try to find information to help me cope with numerous neuropathies that are the results of Chemo/radiation treatment for base of
tongue cancer that was completed 5 years ago. Some of my neuropathies
came about immediately after treatment and others have occured over time
from fibrosis cutting off blood supplies to different nerve groups. The two that cause the most pain is Brachial Plexopathy and neuropathy in my feet.
I am currently getting desparate because the neurontin that was helping some is not doing the job and I am becoming a zombie because I am not getting much sleep mainly because of my feet burning and hurting at night. I hope that I can find some information on this forum that will help give me some relief. When I talk to my doctors about my distress I might as well be talking to my Puppy Koko. I get reassuring looks but that is all.
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Old 08-05-2009, 08:28 PM #2
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Hello kokopup, and welcome to NeuroTalk! This is such a great place to hang out with lots of warm, caring, and helpful people.

We're so glad you found us!

Here is a link to the Peripheral Neuropathy forum:

http://neurotalk.psychcentral.com/forum20.html

I wish you all the best.
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Old 08-06-2009, 12:34 AM #3
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Quote:
Originally Posted by kokopup View Post
I'm here to try to find information to help me cope with numerous neuropathies that are the results of Chemo/radiation treatment for base of
tongue cancer that was completed 5 years ago. Some of my neuropathies
came about immediately after treatment and others have occured over time
from fibrosis cutting off blood supplies to different nerve groups. The two that cause the most pain is Brachial Plexopathy and neuropathy in my feet.
I am currently getting desparate because the neurontin that was helping some is not doing the job and I am becoming a zombie because I am not getting much sleep mainly because of my feet burning and hurting at night. I hope that I can find some information on this forum that will help give me some relief. When I talk to my doctors about my distress I might as well be talking to my Puppy Koko. I get reassuring looks but that is all.
Koko. I'm not sure that I'll be much help I've had peripheral neuropathy for six years and it's been getting worse over the last year. I take 3600 mg. of neurontin each day and sometimes 50 -100 mg of tramadol in the evening (It makes me real tired). I sleep OK, with the help of 2.5 mg of xanax, but the pain in my feet has completely changes my life. I can't walk very far (Just enough to do quick shopping trips, etc.) or stand in line for more than a few minutes. I've taken a dozen other medications but the neurontin seems the best. I don't know what others do after their doctors think they should go beyond neurontin. A friend of mine's dad (in his late 70's)has neuropathy and loves the oxycontin that his doctor perscribes. Will your doctor give you something to help you sleep?
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Old 08-06-2009, 12:03 PM #4
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Just wanted to welcome you to NeuroTalk...you've landed in the right place!! Hope you can find some help soon.

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Old 08-09-2009, 12:46 AM #5
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Default Koko

Welcome to NeuroTalk. Great to see you have come to be with us. Just let us know if we can be of any help. We are all here to assist each other as possible.

Again welcome, looking forward to seeing you around.

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Old 08-09-2009, 11:31 AM #6
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Quote:
Originally Posted by kokopup View Post
I'm here to try to find information to help me cope with numerous neuropathies that are the results of Chemo/radiation treatment for base of
tongue cancer that was completed 5 years ago. Some of my neuropathies
came about immediately after treatment and others have occured over time
from fibrosis cutting off blood supplies to different nerve groups. The two that cause the most pain is Brachial Plexopathy and neuropathy in my feet.
I am currently getting desparate because the neurontin that was helping some is not doing the job and I am becoming a zombie because I am not getting much sleep mainly because of my feet burning and hurting at night. I hope that I can find some information on this forum that will help give me some relief. When I talk to my doctors about my distress I might as well be talking to my Puppy Koko. I get reassuring looks but that is all.
Hi Hon.

Just wanted to share my warm welcome to you.

I am so sorry that you are in such pain. Both my husband and I have neuropathy, but he surely had the worse of it.

I got great relief from using the supplement Methyl B-12. I get it from iherb.com and I take 5000 sub lingually each and every morning.

I have diabetic neuropathy and that might be a bit different that the reason you have your neuropathies.

I have no idea if Methyl B-12 will help you. My husband tried it (but then again, he's had neuropathy for 18 years (no known cause).

It didn't do a darn thing for him, but it stopped the burning in my feet IN IT'S TRACKS.

So goggle Methyl B-12 for Neuropathy. And don't bother asking your doctor if it will help. Only one of my doctors knows about Methyl B-12 Neuropathy treatment and says "hey, if it works, go for it".

All the others roll their eyes.

Remember, Doctor's PRACTICE medicine.

Sometimes we have to go down our own path to find out what works.

I wish you well hon.

Again, WELCOME



Mel
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