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Old 12-30-2009, 03:44 AM #101
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Quote:
Originally Posted by Starglow View Post
"I am almost certain that gabbapintin is part of the cause of my neuropathy"

I just started taking Gabapentin yesterday and would be very interested in hearing why you think it caused your neuropathy?

Thanks....!
It is not from any medical experience it is just that since i started taking gabbapinton it just seemed that my PN became worse . I took it for about a year religiously like i was told by my pain management doctor. I really started having serious hate ons for the doctors since then . Its just that with all the meds I have taken in the last 5 years , the gabba was the only one that I saw any type of change for the worse with . Could really have been my own imagination I guess , but still ....
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Old 01-18-2010, 02:57 PM #102
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Hi! I'm new to this board and am finding it full of a great wealth of information and hope for me. I wish I had known you existed a year ago.

I've been diagnosed with idiopathic neuropathy in both feet. At times it goes up my legs and my left arm. I've been on Neurontin and Amitriptyline for six to eight months, which didn't seem to help that much, and now, just three days ago, I've switched to Lyrica (scared and not sure what to think about it yet ), but I'm going to give it a shot. Also, I've just recently begun taking the WSN Nerve Support Formula (about six weeks ago), and I hope it helps! I do see where it has the B vitamins that have been spoken of here, so I feel better about that, but I'm wondering what other nutrients or minerals I may need? I don't know why I have neuropathy, so I don't know what else to try.

MrsD, if you're out there, would you mind giving me your opinion as to where I may begin? And I'd love to hear from anyone else who has a suggestion. I now have more hope after reading these posts than I ever imagined, so Thank You so much, everyone, for posting the good stuff. Awesome!

I look forward to getting to know the members and sharing thoughts, concerns, and help!
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Old 01-18-2010, 04:21 PM #103
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It would be ideal to have the B12 tested before you started that supplement, to see where you really are.

Another is to get tested for Vit D. This is showing low values for about 1/2 of the people in US. Low D increases pain from any chronic pain problem.

How is your blood sugar? Do you know your HbA1C?

Have you been tested for heavy metal poisoning/exposure?

Also I'd consider gluten intolerance since you have had this for some time. You can have blood tests to show if you have this problem:
http://jccglutenfree.googlepages.com/
This explains alot, and has a neuropathy section.
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Old 01-18-2010, 05:27 PM #104
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I have had my blood sugar checked, and the doctor said it's fine. He also said the B vits are fine to take, that it can't hurt me a bit. As to the others you mentioned, the Vit D and the heavy metal poisoning, I have no idea. I do know that I don't drink white milk, but occasionally drink chocolate. Thank you for posting the site re gluten free. I'll read up on that too!

Thanks, mrsD!

KK
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Old 01-19-2010, 11:38 AM #105
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Mrs D,

I've just read the B-12 thread. And thank you so much for posting so much vital information for those of us still trying to get that cocktail of vitamins as close to perfect as we can.

I would like to know your opinion of the WSN Nerve Support Formula, as far as what type and what the B vitamins are, if you don't mind. Here's a list: Thiamine, 103 mgs; Methyl B-12, 1000 mcgs; B2, 2 mgs; B6, 2 mgs; folic acid, 100 mcgs; Vit D3, 250 IU. I'm taking 9 of these pills a day currently, and they suggest that someone may take up to 12 per day, and then if that does't help, they'll be glad to consult us further. The price for these (120 ct) is right at 54.00 with shipping costs. If there's something I shouldn't be taking, then maybe I should be taking the vitamins separately??? What about any minerals? Any suggestions, or that I could ask my doctor about?

I'm due to go back to my doctor in six weeks to report how I'm
doing on Lyrica, so if there's anything else at all that you can think of that I may try, please let me know. I'm going to ask him to check my Vit C, D, & E. I think you said he could check those, right? I'm pretty sure you may know more than my doctor does!
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Old 01-19-2010, 11:53 AM #106
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Quote:
Originally Posted by kkdaniels View Post
I have had my blood sugar checked, and the doctor said it's fine. He also said the B vits are fine to take, that it can't hurt me a bit. As to the others you mentioned, the Vit D and the heavy metal poisoning, I have no idea. I do know that I don't drink white milk, but occasionally drink chocolate. Thank you for posting the site re gluten free. I'll read up on that too!

Thanks, mrsD!

KK
According to new information on D...milk is useless as a source.
It only has 100 IU of D2 in 8oz.

Here is a video to watch to illustrate the new medical research on the value to good D levels in the blood:

http://www.youtube.com/watch?v=TQ-qekFoi-o
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Old 02-01-2010, 05:50 AM #107
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I am glad that neuropathy can improve....i just hope that means will get better and progress a little faster than they are now. Still affect by it almost 3 years after an accident.
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Old 02-01-2010, 04:55 PM #108
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Cool Smirk People are taking your news the wrong way

I'm not trying to be a party pooper but realistic and accurate. Neuropathies CAN NOT be cured. EMG's is not the only test that will prove you don't have nerve damage. Skin biopsies show you exactly how your nerve damage looks like and the if it's progessing. I'm happy you think you cured yourself if that's what worked for you to cope. We all find ways to cope from our neuropathies but giving people on this site the unaccurate truth is not fair.
I had a total of 6 EMGs. I think you took the neurologist comment to heart when he was probably joking.

Quote:
Originally Posted by LizaJane View Post
My neuropathy began in 1996. By 1999 I had two abnormal EMGs. I think had a bunch of other abnormals. I went to Mayo and had more abnormals.

Today I had an EMG as preparation for spinal surgery and the sensory nerves were normal. I haven't gotten the final report, but he neurologist who did the test said all nerves were normal, except my peroneal, which have never been normal. I do have a new L5 radiculopathy with denervation of the L5 muscles on the left, but it's not new enough to be causing my pain. (that's from the spine)

After seeing the results, one of the neuros said: That means the original diagnosis was wrong, and you never had neuropathy!

Yah, right. I told them I had learned how to care for it--the secret is feeding the mitochondria needed to grow axons (CoQ10, acetyl L carnitine) and taking antioxidants to keep inflammation from causing harm. In addition, keep using the muscles, whether you feel them or not. That was the secret I learned on this forum.

And really, my symptoms are so small compared to 10 years ago. Yes, they're not gone, but they are not that significant.

It can be done. If you've got an idiopathic small fiber neuropathy, or long fiber, and don't have an ongoing CIDP or Sjogren's picture, your peripheral nerves can heal.
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Old 02-01-2010, 07:43 PM #109
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Originally Posted by Simpleboricua View Post
I'm not trying to be a party pooper but realistic and accurate. Neuropathies CAN NOT be cured. EMG's is not the only test that will prove you don't have nerve damage. Skin biopsies show you exactly how your nerve damage looks like and the if it's progessing. I'm happy you think you cured yourself if that's what worked for you to cope. We all find ways to cope from our neuropathies but giving people on this site the unaccurate truth is not fair.
I had a total of 6 EMGs. I think you took the neurologist comment to heart when he was probably joking.
Welcome to PN forum, Simpleboricua.

Many of us on this forum have been here for about 10 yrs or so.
This forum goes back to a previous one, that crashed, so we took up residence here. This thread, if I am not mistaken, does not say "cure". In fact, I don't ever recall seeing the word "cure" used here because we all realize there is no cure.
(spammers may throw that word out, however, and occasionally someone from a website comes here and uses it, but they don't last long).

IMO some kinds of PN can be dealt with, by the patient himself/herself. I think that is the thrust of this particular thread.
The hereditary forms of PN (CMT and amyloidosis) are the only ones so far that we don't have weapons for. Those with autoimmune issues, can benefit from IVIG or plasmapharesis, in some cases. All the rest of the RX drugs available do nothing to change progression of PN. They are palliative only. (pain relief).

But lifestyle changes, identification of deficient vitamins/minerals, dietary changes in the cases of gluten intolerance or other food intolerances, careful choice of footware, etc all can help people reduce pain and progression.
Treatment and management of pre-diabetes, diabetes, thyroid disease, drug causes, etc, all would require some medical support. Except for some of the aggressive neurologists like Dr. Latov and his colleagues, most neurologists fall short on treating PNers.

So this is why this forum exists. Please feel free to read here and learn the stories of our many members. Each one is rather unique.
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These forums are for mutual support and information sharing only. The forums are not a substitute for medical advice, diagnosis or treatment provided by a qualified health care provider. Always consult your doctor before trying anything you read here.

Last edited by mrsD; 02-01-2010 at 08:13 PM. Reason: fixing spelling
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Old 02-03-2010, 10:02 AM #110
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Default tell me about the stickies

Im new here what is this stickies so I can read too
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