Anyone here dealing with peripheral neuropathy?

Posted by rabbit10 @rabbit10, Apr 9, 2016

Anyone here dealing with peripheral neuropathy?

Hi elizm: I never have any problem s when using "PayPal" as they are the middleman and protect me when it comes to paying someone. I rarely give out my credit card info or a debit card, as the money is gone without recourse and they have a somewhat direct path to funds. So I use PayPal!

They said that they were out of the warming type and only had the Cooling in stock. Sometimes in the winter when my feet are really burning but yet very very cold when I touch my pale white colored cold feet, I will use the warming type. For my Arthriturs in my fingers I only use theier warming type. I will pay what ever it take for some relief from the SFN burning that I have and I used to pay a Florida Compounding Pharmacist 600 USD each month and now it is $20 twcie per month. MicTim

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@mictim

Hi elizm: I never have any problem s when using "PayPal" as they are the middleman and protect me when it comes to paying someone. I rarely give out my credit card info or a debit card, as the money is gone without recourse and they have a somewhat direct path to funds. So I use PayPal!

They said that they were out of the warming type and only had the Cooling in stock. Sometimes in the winter when my feet are really burning but yet very very cold when I touch my pale white colored cold feet, I will use the warming type. For my Arthriturs in my fingers I only use theier warming type. I will pay what ever it take for some relief from the SFN burning that I have and I used to pay a Florida Compounding Pharmacist 600 USD each month and now it is $20 twcie per month. MicTim

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@mictim So you are confirming that Michael's Botanicals uses PayPal over the phone… but how much did a bottle of NeuroFreeze cost you?

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I have peripheral neuropathy in my feet which has progressed over the years. I am taking Lyrica which mitigated the pain much of the time but n to always. Sleeping is often a problem. I saw a full page ad in my local paper advertising a seminar on the use of stem cell therapy as a treatment with PN. I am intrigued and am wondering if anyone has had any experience with that procedure or has knowledge about it.

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my friend paid a lot of money to do it for his PN and it did nothing, be careful, sometimes the promises are too good to be true.

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@rpercy7

I have peripheral neuropathy in my feet which has progressed over the years. I am taking Lyrica which mitigated the pain much of the time but n to always. Sleeping is often a problem. I saw a full page ad in my local paper advertising a seminar on the use of stem cell therapy as a treatment with PN. I am intrigued and am wondering if anyone has had any experience with that procedure or has knowledge about it.

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Hello @rpercy7, welcome to Connect. As promising as stem cell research is for a lot of things, I don't believe there has been any successful treatments for neuropathy. You might want to read through the following discussion and meet other members who are discussing stem cell therapy for neuropathy.

Groups > Neuropathy > Stem Cell Therapy for Neuropathy
https://connect.mayoclinic.org/discussion/stem-cell-therapy-for-neuropahy/

There are also some warnings about all the stem cell clinics popping up.

Consumer Updates > FDA Warns About Stem Cell Therapies
https://www.fda.gov/forconsumers/consumerupdates/ucm286155.htm I agree with @salsa that if it's too good to be true it usually is.

John

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@medic7054

Why are your arms in braces? Carpal Tunnel Syndrome is just in your wrist.

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It has to support your wrists from bending so much in that unnatural position. It is caused from repetitive movement,

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I'm wary of new products that are marketed like 'snake oil', using words like 'miracle'. Peggy

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@elizm

@mictim So you are confirming that Michael's Botanicals uses PayPal over the phone… but how much did a bottle of NeuroFreeze cost you?

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No, sorry it took so long as I have been on the other mayo blog page. I just saw there website a few days ago and they use PayPal directly. it was $19.95 for the cooling type. They hav a flat rate of $2.99 USPS. MicTim

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@mictim

No, sorry it took so long as I have been on the other mayo blog page. I just saw there website a few days ago and they use PayPal directly. it was $19.95 for the cooling type. They hav a flat rate of $2.99 USPS. MicTim

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Thanks, MicTim

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This is my first post about P/N which I've experienced for 15 years starting at age 65. It progressed from my feet up to my thighs and it is felt in other upper regions of my body – even my face. My Internist prescribed Gabapentin 100 mg but the side effects are off putting (dizziness) so I have NOT started this medication due to being semi-ambulatory and already have poor equilibrium, therefore I don't want to add side effects which will further increase disequilibrium. My question: I request others who have taken Gabapentin to offer their experience with this drug and how it may (or not) have helped ameliorate the discomforting symptoms of neuropathy. My thanks for any information.

Liked by Chris Trout

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@hurtsalot

This is my first post about P/N which I've experienced for 15 years starting at age 65. It progressed from my feet up to my thighs and it is felt in other upper regions of my body – even my face. My Internist prescribed Gabapentin 100 mg but the side effects are off putting (dizziness) so I have NOT started this medication due to being semi-ambulatory and already have poor equilibrium, therefore I don't want to add side effects which will further increase disequilibrium. My question: I request others who have taken Gabapentin to offer their experience with this drug and how it may (or not) have helped ameliorate the discomforting symptoms of neuropathy. My thanks for any information.

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Hi @hurtsalot, welcome to Connect. Thank you for sharing. I only took gabapentin for a few weeks when I found out it only helps with the pain and does nothing for the numbness so I stopped taking it. I have idiopathic small fiber peripheral neuropathy which I've had for 20+ years but only got it diagnosed a few years ago. I only have numbness with my neuropathy. I would have the same concerns as you on the side effects.

I'm tagging @artscaping, @lioness and @grandmar who may be able to share their experience with gabapentin.

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@johnbishop

Hi @hurtsalot, welcome to Connect. Thank you for sharing. I only took gabapentin for a few weeks when I found out it only helps with the pain and does nothing for the numbness so I stopped taking it. I have idiopathic small fiber peripheral neuropathy which I've had for 20+ years but only got it diagnosed a few years ago. I only have numbness with my neuropathy. I would have the same concerns as you on the side effects.

I'm tagging @artscaping, @lioness and @grandmar who may be able to share their experience with gabapentin.

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@hurtsalot Thank you John for inviting me to join My body can't take high doses and so Dr put me on 100 mg at night It did help alot with the discomfort of neuropathy but the side effects made me stop After a week my mind was doing strange things but everyone is different The normal dose is 300 mg which I couldn't take but there is other doses if you can't take this ,you,ll just have to work with your Dr. @ be your on advocate ,you know your body better then anyone.Good luck

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My Physical Therapist just suggested electronic stimulation – she will email me more info about it. She said it helps some people like me who have the burning type of sensory neuropathy and doesn't help people with other kinds of neuropathy. I will look into it. BTW — Gabapentin helps me and doesn't seem to cause any side affects at this time. Peggy

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I'm exited for the possibility of electronic stimulation helping you Peggy. I have CMT with PN as a by-product and tried acupuncture for 3 years without much relief in my leg numbness and tingling but do not have leg pain like you so I hope that the electronic stimulation provides you some relief. I also take Gabapentin, 100mg 3X/day and find it helpful for pain and sleep.

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@hurtsalot

This is my first post about P/N which I've experienced for 15 years starting at age 65. It progressed from my feet up to my thighs and it is felt in other upper regions of my body – even my face. My Internist prescribed Gabapentin 100 mg but the side effects are off putting (dizziness) so I have NOT started this medication due to being semi-ambulatory and already have poor equilibrium, therefore I don't want to add side effects which will further increase disequilibrium. My question: I request others who have taken Gabapentin to offer their experience with this drug and how it may (or not) have helped ameliorate the discomforting symptoms of neuropathy. My thanks for any information.

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@hurtsalot Good evening and welcome. @johnbishop has asked me to share my gabapentin experience with you. As he mentioned, it does a good job of subduing the tingling and needlelike conditions in the hands and feet. At first, my neurologist wanted me to have a 300 mg tablet in the am and then 2 more an hour before bedtime. I happened to take all 3 of them one morning by mistake and so I experienced the dizziness. As a partner in this process, I sought a solution to the side effect. Because I am a medical cannabis user, I substituted a 2:1 CBD/THC tincture in the morning and again in the afternoon. I then took all 3 tablets of the gabapentin at night. At first, there was some disorientation but I learned to settle down for bedtime and I slept well. I also noticed that my body adjusted to the medication within a few weeks and the disorientation disappeared.

One side effect that does occur is dry mouth. There are OTC mouthwashes and sprays to help with that. I also carry a Contigo with ice water everywhere I go. Having it at the bedside for those times you wake up with cotton mouth is highly recommended. So…start slowly with one 300mg tablet. After a month, add a second one and then if necessary an additional 300 mg one month later. That cautious process really makes you feel more secure and gives your body time to adjust to the medication. Good luck and please keep posting to let us know how it is working. May you be free of suffering and have a lovely evening……Chris

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