Living with Neuropathy - Welcome to the group

Welcome to the Neuropathy group.
This is a welcoming, safe place where you can meet other people who are dealing with neuropathy. Let’s learn from each other and share stories about living well with neuropathy, coping with the challenges and offering tips.

I’m Colleen, and I’m the moderator of this group, and Community Director of Connect. Chances are you’ll to be greeted by volunteer patient Mentor John (@johnbishop) and fellow members when you post to this group. Learn more about Moderators and Mentors on Connect.

We look forward to welcoming you and introducing you to other members. Feel free to browse the topics or start a new one.
Let’s chat. Why not start by introducing yourself? What concerns would you like to talk about?

@steeldove

@rwinney Rachel, if driving is important to you and you can afford the best, take a look at the digital hand controls at http://www.kempf-usa.com It's really pricey, but it helps me to feel in control of my disease. I drive to the swimming pool three days a week, I drive to physical therapy and other medical appointments. Twice I drove it to Minnesota for appointments at Mayo. The inside ring on the steering wheel of my little Prius C is my gas, and the knob on the right is my brake. I can press a small button the dashboard, and the system immediately converts to the usual gas and brake pedals.

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Hello,
That’s quite a slick set up you got there @steeldove. My dad was a C-5 quad. My dad’s therapist wanted him to drive so we bought a new car and had it outfitted. Digital no less, quite a difference from 1970.
Jake

Liked by rwinney

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@jakedduck1

Hello,
That’s quite a slick set up you got there @steeldove. My dad was a C-5 quad. My dad’s therapist wanted him to drive so we bought a new car and had it outfitted. Digital no less, quite a difference from 1970.
Jake

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I was wondering how you had your Dad’s car equipped. Thanks Jim

Liked by Leonard

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@qball2019

@darlingtondoll and @rwinney

Thank you! I truly care for anyone in pain. I have suffered for 17 years now and have seen so many doctors that brushed me off and labeled me a "chronic pain patient" like I didn't matter, a few thought I was a drug seeker, many that didn't believe anything was wrong with me, etc. It's been such a nightmare trying to just find some help and a bit of relief from the pain. People don't realize the affect it has on you physically and emotionally. I wish I had someone to guide me to the right people. I have 4 providers that actually work together on my care and it's just so great. I hope she is close to me because I can also recommend my pain management and physical therapist. Dr. Bluestein has been so wonderful to me. She is the first doctor that has ever taken the time to read through my medical history from start to finish. She is also extremely informative and is willing to think out of the box. I was excited to find out that she has also had a Tarlov cyst so she completely understands my pain. She has people from all over the U.S. come to see her so why don't both of your make a trip? I know you won't regret it! 🙂

I am still looking for a neurologist. Nobody that I have asked can recommend a decent one within 100 miles and definitely not one that would be willing to recognize my Tarlov cysts. If anyone has any suggestions please let me know.

Take care everyone!

Terri

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@qball2019 Excellent advice and it sounds like we have some similarities in selecting a trusted team. I have a great PM, GYN and PCP. I need Neurologist and Rheumatologist. I live in the DFW area and have gone to almost all if not all the Rheumatoid Arthritis practices. Not much comes from them and they won’t work with my PM doctor. I’m having an issue finding a neurologist also. I have one that treats my migraines but thinks all my other diseases and conditions (like EDS) are figments of my imagination. My EDS was diagnosed by another neurologist that my surgeon sent me to. I have a question as to how your EDS is affecting your body. Since I only recently found out about this (I never thought my unusual flexibility being the cause of some of my problems!) I have realized that I don’t have a basis to judge what’s caused by it. Is some of my arthritis?
Thanks and blessings, Susan

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@jakedduck1

Hello,
That’s quite a slick set up you got there @steeldove. My dad was a C-5 quad. My dad’s therapist wanted him to drive so we bought a new car and had it outfitted. Digital no less, quite a difference from 1970.
Jake

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@jakedduck1 and @james4753xerxes The Kempf system was created by a man who was determined to solve his own problem: At the beginning . . . the perseverance of one man

Kempf
Kempf Headquarter in Alsace
In 1954

In 1954 Jean-Pierre KEMPF, who had lost the use of both legs after contracting polio, invented the accelerator ring to be able to drive his car keeping both hands on the steering wheel.
He founded his company in his garage and became the leader in his field in France.

First the accelerator ring was a mechanical device with a rod going through the steering column and pushing on the original accelerator pedal.

When steering wheels started having airbags, the accelerator ring became an electronic device and today it uses digital technology.

At the end of his life in 2002, Jean-Pierre KEMPF had sold over 100 000 accelerator rings. Using an accelerator ring became the standard way of driving for a paraplegic driver in France and many other European countries.

Martine KEMPF, Jean-Pierre's daughter is today CEO of KEMPF Inc. in the US.

Martine Kempf is herself a talented inventor and business woman. I was amazed to find that she gave me her direct phone line and that she responded quickly to my emails. The cost of the device includes picking up your vehicle and transporting it on a truck to their facility (mine went to Florida) and returning your vehicle the same way.

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It works really well for me with no side effects. If I am an hour late for a dose, the pain reminds me to take it. I have been taking it for eight years and nothing else works as well. Lyrica did not work for me.

Liked by gldnrtrvrlvr

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@steeldove

@rwinney Rachel, if driving is important to you and you can afford the best, take a look at the digital hand controls at http://www.kempf-usa.com It's really pricey, but it helps me to feel in control of my disease. I drive to the swimming pool three days a week, I drive to physical therapy and other medical appointments. Twice I drove it to Minnesota for appointments at Mayo. The inside ring on the steering wheel of my little Prius C is my gas, and the knob on the right is my brake. I can press a small button the dashboard, and the system immediately converts to the usual gas and brake pedals.

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I watched the video. I like the way you can use both hands on the wheel when turning right or left. I have the right kind of car for this application (Acura MDX).

Liked by steeldove, Leonard

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@darlingtondoll

It works really well for me with no side effects. If I am an hour late for a dose, the pain reminds me to take it. I have been taking it for eight years and nothing else works as well. Lyrica did not work for me.

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@darlingtondoll Consider yourself one of the fortunate few for whom Gabapentin works well and with no side effects.

Liked by Leonard

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@james4753xerxes

I was wondering how you had your Dad’s car equipped. Thanks Jim

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I don’t remember the specifics but it was a rod sticking out of the R side of the steering column. He had severe contractions which made it more difficult. He didn’t feel he could drive it safely and had the controls removed and bought a van to accommodate his wheelchair.
Jake

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I do think doctors prescribe gaba and lyrica off label for conditions in which it is useless against pain; my husband tried it for sciatica and back pain prior to surgery and it did not help at all. I do know that myself and 3 other friends of mine depend on it (gabapentin only) for our neuropathy, we all use different dosages and they have been on it for 10-20 yrs. I hope I can still say this 10 yrs. from now if the pharma industry doesn’t develop something better. That is not to say that I don’t experience side effects but they don’t outweigh the benefit.

Liked by steeldove

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@steeldove

@darlingtondoll Consider yourself one of the fortunate few for whom Gabapentin works well and with no side effects.

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@darlingtondoll @steeldove

Don't mean to chime in on your conversation. I certainly don't mean any disrespect. I have found that Lyrica works better for me than gabapentin. I have used it for about 13 years. I do have some side affects but nothing terrible like I've heard other people talk about. My issues began with a bad fall I took on my kitchen floor. It primarily works the pain associated with my spine. I have vertebrae in a couple different places slipping over the top of each other and 4 osteophytes (bone spurs) in my cervical area that are touching my spinal cord. It does help a little with my tethered cord and Tarlov cyst pain as well. I can't say that I notice much of a difference with the neuropathy though. I've had multiple doctors over the years tell me that everyone is "wired" differently and what works for one may not work for another. You just need to try different things to see if they help.

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@darlingtondoll

It works really well for me with no side effects. If I am an hour late for a dose, the pain reminds me to take it. I have been taking it for eight years and nothing else works as well. Lyrica did not work for me.

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Sorry… in addition to Lyrica I also had Fentynal patches 50mg X2 for about 12 years and I can say they definitely help with the spinal pain. One of my doctors now prescribed ketamine troches (dissolve under tongue) as an alternative and it works really well for the spinal issues and all my other nerve related pain.

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@qball2019

@darlingtondoll @steeldove

Don't mean to chime in on your conversation. I certainly don't mean any disrespect. I have found that Lyrica works better for me than gabapentin. I have used it for about 13 years. I do have some side affects but nothing terrible like I've heard other people talk about. My issues began with a bad fall I took on my kitchen floor. It primarily works the pain associated with my spine. I have vertebrae in a couple different places slipping over the top of each other and 4 osteophytes (bone spurs) in my cervical area that are touching my spinal cord. It does help a little with my tethered cord and Tarlov cyst pain as well. I can't say that I notice much of a difference with the neuropathy though. I've had multiple doctors over the years tell me that everyone is "wired" differently and what works for one may not work for another. You just need to try different things to see if they help.

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@steeldove @darlingtondoll @qball2019

I don't think we should identify a drug as a scam unless we can quote reputable medical literature to back up that claim. The article in the NYT criticizes prescribing practices, but does not claim Gabapentin itself is a scam. And how horrible is it that doctors are being discouraged from prescribing opioids and therefore forced to search for other options that may ultimately be completely ineffective 🙁

I am a bit sensitive about this topic because I remember being prescribed anti-depressants several decades ago, and virtually all of my close friends tried to convince me to stop taking it because they heard 'bad things' about anti-depressants. The truth of the matter is: That drug saved my life. Regardless of the horror stories my friends heard about anti-depressants, it literally saved my life. They obviously had no idea how depressed I was, how close to death I was – or they never would have tried to convince me to let go of my medically prescribed lifeline.

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@iceblue

@steeldove @darlingtondoll @qball2019

I don't think we should identify a drug as a scam unless we can quote reputable medical literature to back up that claim. The article in the NYT criticizes prescribing practices, but does not claim Gabapentin itself is a scam. And how horrible is it that doctors are being discouraged from prescribing opioids and therefore forced to search for other options that may ultimately be completely ineffective 🙁

I am a bit sensitive about this topic because I remember being prescribed anti-depressants several decades ago, and virtually all of my close friends tried to convince me to stop taking it because they heard 'bad things' about anti-depressants. The truth of the matter is: That drug saved my life. Regardless of the horror stories my friends heard about anti-depressants, it literally saved my life. They obviously had no idea how depressed I was, how close to death I was – or they never would have tried to convince me to let go of my medically prescribed lifeline.

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I completely agree with you. They need to walk a mile in your shoes.

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@iceblue

@steeldove @darlingtondoll @qball2019

I don't think we should identify a drug as a scam unless we can quote reputable medical literature to back up that claim. The article in the NYT criticizes prescribing practices, but does not claim Gabapentin itself is a scam. And how horrible is it that doctors are being discouraged from prescribing opioids and therefore forced to search for other options that may ultimately be completely ineffective 🙁

I am a bit sensitive about this topic because I remember being prescribed anti-depressants several decades ago, and virtually all of my close friends tried to convince me to stop taking it because they heard 'bad things' about anti-depressants. The truth of the matter is: That drug saved my life. Regardless of the horror stories my friends heard about anti-depressants, it literally saved my life. They obviously had no idea how depressed I was, how close to death I was – or they never would have tried to convince me to let go of my medically prescribed lifeline.

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@iceblue I should have chosen a more appropriate word than scam.

Liked by johnhans

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