Anyone here dealing with peripheral neuropathy?

Posted by rabbit10 @rabbit10, Apr 9, 2016

I too am interested in what supplements people have been using that have helped PN. I take Fish Oil and also have started taking CBD oil that works great for sleep and an ointment of THC/CBD for pain; this doesn't help much.

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@judypall

Exactly what supplements are you taking? Dose and strength? I have ideopathic Neuropathy and do not want to take Px drugs. I have a shelf full of vitamins. But would like to know what worked for you.

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@judypall @margottaylor — I found the supplements that I take through a closed Facebook group Solutions to Peripheral Neuropathy Pain & Discomfort. Even though it has helped me it may or may not work for everyone. I posted links to the group and their website where I order the supplements in my story earlier on Connect here: https://connect.mayoclinic.org/discussion/anyone-here-dealing-with-peripheral-neuropathy/?pg=42#comment-65985. I would recommend joining the group and then reading their new member post which tells you all about how it helps you.

There is a link to join the group on the website – http://solutions2pnpd.com/. Also there is a page where you can order all of the vitamins and supplements through Amazon as well as a page of instructions on how to start taking the protocol of supplements.

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@johnbishop

@judypall @margottaylor — I found the supplements that I take through a closed Facebook group Solutions to Peripheral Neuropathy Pain & Discomfort. Even though it has helped me it may or may not work for everyone. I posted links to the group and their website where I order the supplements in my story earlier on Connect here: https://connect.mayoclinic.org/discussion/anyone-here-dealing-with-peripheral-neuropathy/?pg=42#comment-65985. I would recommend joining the group and then reading their new member post which tells you all about how it helps you.

There is a link to join the group on the website – http://solutions2pnpd.com/. Also there is a page where you can order all of the vitamins and supplements through Amazon as well as a page of instructions on how to start taking the protocol of supplements.

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@johnbishop thanks for the reminder about the supplement site and protocol.
I’ll check it out. @margottaylor

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@grandmar

@steeldove
Hello!
John direxcted me to your post.
I have neuropathy and my doctors told me I can no longer drive.
I am thinking of retrofitting my car with hand controls.
Can you please tell me how I go about having it done?
You mentioned getting a drivng eval. Is that for insurance to help pay?
You also mentioned different kinds.
Lastly, if it is not too personal, what was the cost?
I understand that they type and year of car, as well as where I live will have an impact on the cost.
It's OK is you do not want to reveal that info, or, if you like, you can PM me.
Thank you!
Ronnie (GRANDMAr)

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@grandmar Ronnie, go to the Kempf website http://www.kempf-usa.com First look at the Customer Service page to see if any of your questions are answered there. Then, call Kempf to request a quotation. I do not know what factors are included in their quotations (My car is a 2013 Prius C), but the quote does include transport of your vehicle to the Kempf facility in Florida and return to you, and a lifetime warranty. I did not qualify for any financial aid (fortunately, a daughter who paid for the equipment as a gift for my 80th birthday!), but did get the impression from interactions with Martine Kempf that she's willing to work with you on price if you are self-paying. She answers her cell phone and responds personally to emails!

As to a driving evaluation, I gather that it varies from state to state. Here in Missouri, a doctor must order the evaluation. I suggest that you call your local DMV and ask about your state and/or county regulations concerning driving with hand controls.

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@steeldove

@grandmar Ronnie, go to the Kempf website http://www.kempf-usa.com First look at the Customer Service page to see if any of your questions are answered there. Then, call Kempf to request a quotation. I do not know what factors are included in their quotations (My car is a 2013 Prius C), but the quote does include transport of your vehicle to the Kempf facility in Florida and return to you, and a lifetime warranty. I did not qualify for any financial aid (fortunately, a daughter who paid for the equipment as a gift for my 80th birthday!), but did get the impression from interactions with Martine Kempf that she's willing to work with you on price if you are self-paying. She answers her cell phone and responds personally to emails!

As to a driving evaluation, I gather that it varies from state to state. Here in Missouri, a doctor must order the evaluation. I suggest that you call your local DMV and ask about your state and/or county regulations concerning driving with hand controls.

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@steeldove
Thank you so much for the information!
Have a fantastic weekend!
Ronnie

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In Virginia, the DMV asks right on the application for a license "What medicines do you take?" If you list certain ones on the state's 'controlled substance' list (Lyrica and Gabapentin are on it) the DMV clerk refuses to issue you a license. It happened to me! I asked for the DMV Head Manager and challenged the constitutionality of that. They let me write a new application, not listing the offending medicine, and I got a license. Now, I'm moving to Delaware soon. If Delaware asks what medicines I take, I'm going to write 'none'. I've never had an accident in my life. This is America, I recall that we are supposed to be innocent until proven guilty, not punished just in case we might have an accident some day. Peggy

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@pfbacon

In Virginia, the DMV asks right on the application for a license "What medicines do you take?" If you list certain ones on the state's 'controlled substance' list (Lyrica and Gabapentin are on it) the DMV clerk refuses to issue you a license. It happened to me! I asked for the DMV Head Manager and challenged the constitutionality of that. They let me write a new application, not listing the offending medicine, and I got a license. Now, I'm moving to Delaware soon. If Delaware asks what medicines I take, I'm going to write 'none'. I've never had an accident in my life. This is America, I recall that we are supposed to be innocent until proven guilty, not punished just in case we might have an accident some day. Peggy

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@pfbacon
Good Morning!
Wow! I never heard of this. I've lived in a few states and never did they ask such a question. I've lived in NY, Maryland, PA, NJ and FL. I'd think that goes against medical privacy laws.
Glad you spoke up. In reality, the clerk suggested you commit fraud on your application. That can't be good, either.

Ronnie (GRANDMAr)

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@pfbacon

In Virginia, the DMV asks right on the application for a license "What medicines do you take?" If you list certain ones on the state's 'controlled substance' list (Lyrica and Gabapentin are on it) the DMV clerk refuses to issue you a license. It happened to me! I asked for the DMV Head Manager and challenged the constitutionality of that. They let me write a new application, not listing the offending medicine, and I got a license. Now, I'm moving to Delaware soon. If Delaware asks what medicines I take, I'm going to write 'none'. I've never had an accident in my life. This is America, I recall that we are supposed to be innocent until proven guilty, not punished just in case we might have an accident some day. Peggy

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@pfbacon @grandmar
Although I had a Virginia driver's license back in the Dark Ages, I don't recall anyone asking about medications at that time, but I'm going to take a guess as to why gabapentin (the generic of Neurontin) raised a red flag. Initially, Neurontin (while still under patent) was prescribed as an anti-convulsive medication. It later was used for diabetic neuropathy and postherpetic neuralgia. Common side effects can include sleepiness, dizziness, and in some cases, aggressive behavior.

I can see someone at DMV say/think that the side effects are dangerous for drivers and others on the road, and, if someone has lost the feeling in their feet, their driving abilities can be impaired.

From personal experience, when initially prescribed gabapentin for my chemo-induced neuropathy, even the low dose gave me brain-fog which made me feel unsafe while driving. (One begins on a low dose and works up to a therapeutic dose after a few weeks with this kind of med). I stopped taking it after three days. I then was prescribed venlafaxine. A few days after taking the minimal dose I found myself driving 40-45 mph on the freeway, and it took me several minutes to recognize the inappropriate speed. I immediately stopped using it. So yes… I can see the DMV's point.

Because being able to drive is crucial for me, this is why I went in search of a non-pharmaceutical which could address the pain/burning in my feet and hands.

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@elizm

@pfbacon @grandmar
Although I had a Virginia driver's license back in the Dark Ages, I don't recall anyone asking about medications at that time, but I'm going to take a guess as to why gabapentin (the generic of Neurontin) raised a red flag. Initially, Neurontin (while still under patent) was prescribed as an anti-convulsive medication. It later was used for diabetic neuropathy and postherpetic neuralgia. Common side effects can include sleepiness, dizziness, and in some cases, aggressive behavior.

I can see someone at DMV say/think that the side effects are dangerous for drivers and others on the road, and, if someone has lost the feeling in their feet, their driving abilities can be impaired.

From personal experience, when initially prescribed gabapentin for my chemo-induced neuropathy, even the low dose gave me brain-fog which made me feel unsafe while driving. (One begins on a low dose and works up to a therapeutic dose after a few weeks with this kind of med). I stopped taking it after three days. I then was prescribed venlafaxine. A few days after taking the minimal dose I found myself driving 40-45 mph on the freeway, and it took me several minutes to recognize the inappropriate speed. I immediately stopped using it. So yes… I can see the DMV's point.

Because being able to drive is crucial for me, this is why I went in search of a non-pharmaceutical which could address the pain/burning in my feet and hands.

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@elizm
Happy Sunday,
I have no doubt that you are correct about why. There are people who drive, who shouldn't have a license, like those who have seizures. However, if a doctor or nurse cannot talk about a medicine in front of others, doesn't this also cross the line?
I know it is important for those of us who take certain meds for certain issues, should not drive, but there has to be a better way.
No, I don't know what that would be.

And so it goes…….
Ronnie (GRANDMAr)

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@grandmar

@elizm
Happy Sunday,
I have no doubt that you are correct about why. There are people who drive, who shouldn't have a license, like those who have seizures. However, if a doctor or nurse cannot talk about a medicine in front of others, doesn't this also cross the line?
I know it is important for those of us who take certain meds for certain issues, should not drive, but there has to be a better way.
No, I don't know what that would be.

And so it goes…….
Ronnie (GRANDMAr)

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I suspect that the issue goes back to days when epilepsy was a reason for bering denied a driving license, and that neurontin/gabapentin was first used to control epilepsy. Here's some interesting information about how different states deal with this: https://www.epilepsy.com/driving-laws/2008871/2008766

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@elizm

@pfbacon @grandmar
Although I had a Virginia driver's license back in the Dark Ages, I don't recall anyone asking about medications at that time, but I'm going to take a guess as to why gabapentin (the generic of Neurontin) raised a red flag. Initially, Neurontin (while still under patent) was prescribed as an anti-convulsive medication. It later was used for diabetic neuropathy and postherpetic neuralgia. Common side effects can include sleepiness, dizziness, and in some cases, aggressive behavior.

I can see someone at DMV say/think that the side effects are dangerous for drivers and others on the road, and, if someone has lost the feeling in their feet, their driving abilities can be impaired.

From personal experience, when initially prescribed gabapentin for my chemo-induced neuropathy, even the low dose gave me brain-fog which made me feel unsafe while driving. (One begins on a low dose and works up to a therapeutic dose after a few weeks with this kind of med). I stopped taking it after three days. I then was prescribed venlafaxine. A few days after taking the minimal dose I found myself driving 40-45 mph on the freeway, and it took me several minutes to recognize the inappropriate speed. I immediately stopped using it. So yes… I can see the DMV's point.

Because being able to drive is crucial for me, this is why I went in search of a non-pharmaceutical which could address the pain/burning in my feet and hands.

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I don't know why we (Americans) are letting Politicians "practice medicine without a license". They are the ones who make the laws that the DMV applies to us. I have no side affects with Gabapentin. OTC medicines do not even begin to stem the neuropathic pain that I have. Gabapentin does. Peggy

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@pfbacon

I don't know why we (Americans) are letting Politicians "practice medicine without a license". They are the ones who make the laws that the DMV applies to us. I have no side affects with Gabapentin. OTC medicines do not even begin to stem the neuropathic pain that I have. Gabapentin does. Peggy

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@pfbacon I also think Gabapentin works well most of the time, though sometimes I need a boost w 600mg Advil.

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