Anyone here dealing with peripheral neuropathy?

Posted by rabbit10 @rabbit10, Apr 9, 2016

Anyone here dealing with peripheral neuropathy?

@angiepainter

Hi, I'm Angie and I just found this discussion group. I have peripheral neuropathy from chemotherapy. During my treatments, the neuropathy was just tingling and extrabated by cold. Now it is intense pain and numbness in my hands and feet. My last treatment was in November and I've read that for many, the neuropathy slowly goes away…i am praying this will be the case for.me as well. I was put on lyrica but had severe side effects and am now weaning off…having some issues with withdrawal from that too. I've tried physical therapy, lidocaine patches, CBD oil and ibuprofen but nothing seems to relieve the pain.
Does anyone have any other suggestions? Any help is appreciated.

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Angie, I had base of tongue cancer in late 2014. I had Cisplatin chemo and radiation, which ended in mid-December 2014. By March 2015, I had developed numbness and tingling in my hands, which eventually spread pretty much to the whole upper body. Today, I still have the numbness and tingling in my hands and arms, and even into my shoulders and both ears, but fortunately no pain. I have no lower body symptoms at all. I have a significant loss of dexterity, worse on the left side. The right side did improve some over time.
I have had and tried all kinds of treatment from the very start: therapy, medications, tests, acupuncture, etc. It didn’t help. Nothing has helped.
I ran across an article on clinical trials by a company called WinSanTor. They are using a drug based on perinzepine, an existing medication, called WST-057. It is on a fast rack since perinzepine is already FDA approved. Check them out. It has been mentioned in threads on this site. It sounds promising but may not work for everyone.

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@cbcbasket

Angie, I had base of tongue cancer in late 2014. I had Cisplatin chemo and radiation, which ended in mid-December 2014. By March 2015, I had developed numbness and tingling in my hands, which eventually spread pretty much to the whole upper body. Today, I still have the numbness and tingling in my hands and arms, and even into my shoulders and both ears, but fortunately no pain. I have no lower body symptoms at all. I have a significant loss of dexterity, worse on the left side. The right side did improve some over time.
I have had and tried all kinds of treatment from the very start: therapy, medications, tests, acupuncture, etc. It didn’t help. Nothing has helped.
I ran across an article on clinical trials by a company called WinSanTor. They are using a drug based on perinzepine, an existing medication, called WST-057. It is on a fast rack since perinzepine is already FDA approved. Check them out. It has been mentioned in threads on this site. It sounds promising but may not work for everyone.

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Hi, @cbcbasket – you might also be interested in the Connect Head & Neck Cancer group https://connect.mayoclinic.org/group/head-neck-cancer/

How are you managing the numbness and tingling while you wait for new medications to come on the market?

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@lisalucier

Hi, @cbcbasket – you might also be interested in the Connect Head & Neck Cancer group https://connect.mayoclinic.org/group/head-neck-cancer/

How are you managing the numbness and tingling while you wait for new medications to come on the market?

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I have sort of become accustomed to it, as weird as that sounds. It is literally constant. The numbness rears its ugly head when I cut myself or something like that, and don't feel it.
The thing I notice much more is the loss of dexterity in my hands, because we use them all the time, so it's a constant reminder. That and the loss of upper body strength, which I notice every day.
Over the last few years I have plateaued; no better, no worse, or maybe some better in the right hand. That's why I still hope.
Thanks for the reference.

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@angiepainter

Hi, I'm Angie and I just found this discussion group. I have peripheral neuropathy from chemotherapy. During my treatments, the neuropathy was just tingling and extrabated by cold. Now it is intense pain and numbness in my hands and feet. My last treatment was in November and I've read that for many, the neuropathy slowly goes away…i am praying this will be the case for.me as well. I was put on lyrica but had severe side effects and am now weaning off…having some issues with withdrawal from that too. I've tried physical therapy, lidocaine patches, CBD oil and ibuprofen but nothing seems to relieve the pain.
Does anyone have any other suggestions? Any help is appreciated.

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Hi Angie, I also have excruciating pain from neuropathy in my feet. I have throbbing, jabbing, stabbing, extreme heat, and toes that have very bizarre sensations. I use a CBD salve that I put on my feet that saves me. I do not know what I would do with out it. It is called Ananda Hemp from the Ananda Hemp Company. It is Specturm Salve 125, 25 grams, and if I remember it costs about twenty five dollars. It is from the hemp plant, but contains no THC. I find it fabulous for pain, and believe me, I have tried many things. You can order it on line, and it comes to your house within a week, or less. Perhaps give it a try. My toes are the worst, They tend to stiffen and throb terribly, and the salve just loosens them and makes them feel normal. A blessing from God. Lori Renee

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@steeldove

Sophia86, I hate to sound so negative, but I've never heard of anyone recovering from the nerve damage of neuropathy, especially when you've had it for so long. When I lost feeling in both legs and feet last year, I had to stop driving, but was determined to find a way to get back to driving. My answer is the Kempf electronic hand controls that I had installed on my little Prius C. Since getting back the car with the Kempf equipment in late July, I've driven almost 2,000 miles, including a roundtrip from Springfield, MO, to Rochester, MN. My advice is to get a doctor to prescribe a Driving Evaluation. From there, you decide what will work for you. I found that the mechanical equipment I tried was not the answer for me, but when I tried the electronic equipment, I found it so intuitive that I was comfortable with it after five minutes. It's expensive, but so very worth it. The photo shows the new equipment on my car. Incidentally, I'm 80 years old.

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@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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@johnbishop

Hi Jim (@jimhd), I'm really happy to hear the spinal cord stimulator is giving you some relief from pain. If it works it is so much better than the drugs used for neuropathy pain symptoms. The drugs just mask the pain and a lot of the times you have to up the dosage to keep the pain at bay. They really do not address the problem – damaged nerves which cause the pain signals to be sent to the brain.

I do not have the pain but I have had the numbness in my feet and legs for over 20 years. It was only last year when I started being more proactive that I became aware of how the drugs work. Because the numbness was just below my knees I started to worry and I asked my doctor about lyrica (you know all those TV ads glorifying it) for my undiagnosed neuropathy. She put me on gabapentin and after a month I went back and told her it wasn't doing anything for me. She had a consult with the Mayo primary care doctor team and another doctor quizzed me on my symptoms. When I told him I didn't have any pain but only the tingling and the numbness, he told me the gabapentin (generic lyrica I think) only addresses the pain and does nothing for the numbness. My primary care doctor had me get a couple of different MRIs and the EMG before I could see the neurologist. After I met with him, he diagnosed that I had idiopathic small fiber peripheral neuropathy and I was one of the "lucky" ones that only had the numbness symptoms without the pain. He also burst my bubble by telling me there are no topicals, creams, medications that will address numbness. I left that appointment pretty depressed and started my search to learn as much as I can about my SFPN.

I learned there are a bunch of companies and folks with neuropathy treatments looking to take your money and it's up to you to do your own research and avoid scams. Fortunately there is a lot of information on how to avoid scams but it's out of sight, out of mind for a lot of folks. Here are the ones I've used:

Quazar's wonderful guidance about avoiding scams and snake oil cures:
https://connect.mayoclinic.org/discussion/how-to-avoid-quacks-and-snake-oil-treatments/

FDA's HEALTH FRAUD PAGE
https://www.fda.gov/forconsumers/consumerupdates/ucm278980.htm

You can also link to this great resource from NIH's National Center for Complementary and Integrative Health (NCCIH) which offers guidance about integrative health and how to evaluate it.
https://nccih.nih.gov/health/decisions

That said, I have found something that works for me and has helped a lot of folks with PN get off of the pain medications. I was skeptical at first and took the list of supplements and vitamins to my doctor who shared it with the Mayo pharmacist to get his feedback on any interactions. His only comment was he thought the omega 3s in the list was pretty high and thought it should be less. But again, I'm the one with the health issue and it's my body so I took his input and did some further research and found that it was within guidelines of the numbers for omega 3 supplements for treating what ails me according to information on the Mayo Clinic's website:

http://www.mayoclinic.org/drugs-supplements/omega-3-fatty-acids-fish-oil-alpha-linolenic-acid/dosing/hrb-20059372

This is the website for Facebook Group I found – Solutions to Peripheral Neuropathy Pain & Discomfort (501c3) – http://www.facebook.com/groups/spnpd – website: http://solutions2pnpd.com/. It has been a blessing for me to find the group. I started taking the supplements/vitamins September 2016 and by December the numbness in both legs went from just below the knees to just above the ankles. I haven't made any more progress since December but I'm OK with it since I feel it has stopped the progression. My neurologist had told me to just watch it and let him know when it gets worse – in other words there is nothing I can do to fix it. Others in the group with pain that had them bedridden have reported they are now able to live a normal lifestyle and have been able to taper off the drugs once they were on the full protocol and started feeling better. If you do decide to take a look and join the group, please read all of the information.

Hoping all of my neuropathy friends find a treatment that works for them!

John

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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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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.

Liked by grandmaR

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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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