1. < Neuropathy

Is it worth trying to resolve peripheral neuropathy?

Posted by darrenm @darrenm, Jul 31, 2020

G'day,

I'm 53 yo bloke and suffer from peripheral neuropathy. I get these sharp burning/stinging pains (like bee stings) that usually start in my hands and feet and then spread to my lower torso. Usually starts first thing in the morning and maybe flare-up 3-5 times over the first few hours of the day with then just occasional atacks later in the day. The pain is usally quite severe and last for 2-3 minutes in duration where I usually rush to the nearest tap and use cold water to try and soothe the pain.

It all began randomly 4 years ago, lasted for about 3-5 months then disappeared for 6 months, came again for a similar period of time except the pain got worse. It came back in a mild form a year or so ago but again disappeared. It has just started again last week and it is worse than ever. Shooting, searing pain in hands feet, and lower back and stomach. I believe I have a high pain threshold, but the pain is is pretty bad and makes me reluctant to leave home to avoid a public episode.

I have seen doctors and a neurologist without a definitive diagnosis though SFN was first assumed. I have been prescribed, Endep, Lyrica and Andrepera all with no success, made literally zero difference even after months of use. I am arranging to see the neurologist again, but wondering what the point is given it's primarily about pain management and I already know that but none of it has worked in the past. Apologies if I sound negative or entitled, just frustrated.

Cheers Darren

Interested in more discussions like this? Go to the Neuropathy Support Group.

darrenm | @darrenm | Aug 4, 2020
In reply to @user_che214927 "That's great mate. What part of Victoria.You are a lucky man as I have researched and..." + (show)
@user_che214927

That's great mate. What part of Victoria.You are a lucky man as I have researched and know the right people in Vic, especially the neurologists.I am on both Facebook or Instagram. I believe we can work on this together. Incidently I live in Sunbury

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G'day Barry, I'm in Geelong, almost a neighbour! Sent a FB request.

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darrenm | @darrenm | Aug 4, 2020
In reply to @johnbishop "Thanks Hank @jesfactsmon - I tagged Barry @user_che214927 in my post to welcome @darrenm when I..." + (show)
@johnbishop

Thanks Hank @jesfactsmon - I tagged Barry @user_che214927 in my post to welcome @darrenm when I noticed that he was also from Australia. Just had a feeling that it helps to know you are not the only one from "Down Under" that and I was really ticked that I never made it to Australia while I was in the Navy. The ship I was on stopped in Australia in 1967, a year after I was discharged. Anyone remember Down Under by Men at Work?: https://www.youtube.com/watch?v=XfR9iY5y94s

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Thanks, Hank, and to all here. BTW, it appears that Lyrica is having a positive effect even though it had no effect previously. I don't quite understand why that is so, and it is still early days, but the episodes have both reduced in number and def intensity. I'll take that.

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notastall78 | @notastall78 | Aug 17, 2020
In reply to @jesfactsmon "Hi Darren, welcome to Connect. You are definitely not alone in your issue of what sounds..." + (show)
@jesfactsmon

Hi Darren, welcome to Connect. You are definitely not alone in your issue of what sounds to me like a case of peripheral neuropathy. There are tests many people have done, such as a nerve conduction test or skin punch biopsy which you could ask your doc about. My wife had her PN start during chemotherapy in 2014 and she has had burning in both feet. She was not diagnosed but it was pretty clear it was PN. She has progressed from a fairly mild case that used to start in the early evening to now having it start as soon as she wakes up and lasts all day. You might find that yours progresses as well. It seems to for many people. She does not believe drugs are an answer, for her at least, but she did give gabapentin (neurontin) a try. It did not help her although for others it's a mixed bag with some getting no benefit, like my wife, and some swearing by it as their savior. Opioids seem to not help most people with PN. One person who is a mentor here, @jimhd Jim, relies on morphine to get him through the worst of his pain. Several people who post here have had nerve stimulators installed in their bodies, and these have helped a lot in some cases, not so much in others. Like everything neuropathy based, every case plays out differently. Some who have tried stimulators are, again, Jim, as well as Barb @barbbie both of whom have had a spinal cord stimulator installed, Lori @lorirenee1 who recently got a dorsal root ganglion (DRG) stimulator and Fred @fredjan2016 who has had a neuro stimulator inserted into his feet/ankles. These stimulators seem to be the latest thing that many people are trying these day to deal with their pain. Anyway, I have given you a little of what I know about this horrible condition and how people deal with it. I am sure you will find lots of people to discuss this with on Mayo Connect. I just happen to be the first to reply to you. It's the middle of the night here in the USA and I get up very early. Good luck to you Darren, please stay in touch with this group, hey are a great bunch of people and super helpful! Best, Hank

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I have been diagnosed with peripheral neuropathy. Believed to be caused by Vitamin B supplements. Does anyone on this thread have information or can guide me for more info.

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1 reply
Mentor
John, Volunteer Mentor | @johnbishop | Aug 17, 2020
In reply to @notastall78 "I have been diagnosed with peripheral neuropathy. Believed to be caused by Vitamin B supplements. Does..." + (show)
@notastall78

I have been diagnosed with peripheral neuropathy. Believed to be caused by Vitamin B supplements. Does anyone on this thread have information or can guide me for more info.

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Hello @notastall78, Welcome to Connect. I see that you have posted a similar question in another discussion. There is some evidence about vitamin B6 toxicity induced neuropathy. There's also another discussion here on Connect that you may want to read through and learn what others have shared.

B-6 vitamin danger!: https://connect.mayoclinic.org/discussion/b-6-vitamin-danger/

Have you had labs that show a high amount of vitamin B6?

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mjpm2406 | @mjpm2406 | Aug 24, 2020

I have a family history of PN going back at least four generations. They said it was the Anglo Saxon disease because our family came from Southern England and there was a large family cluster of people in that area with similar symptoms. No one had ever had a genetics test but doctors in Canada diagnosed my oldest brother with CMT. My symptoms started at age 60. Loss of feeling in my toes, inability to bend my toes, tingling in my lower legs. At age 72 it kicked into high gear with spasms shooting up my legs, into my hips and across my shoulders Gabapentin and Lyrica didn't help. So I opted to seek out a geneticist to identify what was really going on. I had a comprehensive neuropathy panel done that looked at 83 genes known to cause CMT and HSN plus several other add-on genes to eliminate other potential diseases. The results were adult-onset SMA based on the detection if the SMN1 coding gene and CMT Type 4. There were two other gene abnormalities which require another panel which is designed to tests all the genes known to cause Muscular Dystrophy. The SMA thing is tough to grasp because 90% of people who get this disease are children and for them it's a terrible disease. The genetic test is a simple saliva test and the company that has those tests is Invitae. You can go to Invitae.com to look at the various panels they have. Most insurance companies cover these tests. If not, they have a program for $250 per panel. I wanted to know and I'm on a personal search to put a name to whatever it is that keeps me up all night. Sleeping in a bed is not possible because of the tingling and spasms. So I end up on a recliner every night. Good luck with your NP.

REPLY
1 reply
Mentor
John, Volunteer Mentor | @johnbishop | Aug 24, 2020
In reply to @mjpm2406 "I have a family history of PN going back at least four generations. They said it..." + (show)
@mjpm2406

I have a family history of PN going back at least four generations. They said it was the Anglo Saxon disease because our family came from Southern England and there was a large family cluster of people in that area with similar symptoms. No one had ever had a genetics test but doctors in Canada diagnosed my oldest brother with CMT. My symptoms started at age 60. Loss of feeling in my toes, inability to bend my toes, tingling in my lower legs. At age 72 it kicked into high gear with spasms shooting up my legs, into my hips and across my shoulders Gabapentin and Lyrica didn't help. So I opted to seek out a geneticist to identify what was really going on. I had a comprehensive neuropathy panel done that looked at 83 genes known to cause CMT and HSN plus several other add-on genes to eliminate other potential diseases. The results were adult-onset SMA based on the detection if the SMN1 coding gene and CMT Type 4. There were two other gene abnormalities which require another panel which is designed to tests all the genes known to cause Muscular Dystrophy. The SMA thing is tough to grasp because 90% of people who get this disease are children and for them it's a terrible disease. The genetic test is a simple saliva test and the company that has those tests is Invitae. You can go to Invitae.com to look at the various panels they have. Most insurance companies cover these tests. If not, they have a program for $250 per panel. I wanted to know and I'm on a personal search to put a name to whatever it is that keeps me up all night. Sleeping in a bed is not possible because of the tingling and spasms. So I end up on a recliner every night. Good luck with your NP.

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@mjpm2406 - Thanks for sharing your your experience and knowledge on the gene testing and finding out you have adult-onset Spinal Muscular Atrophy (SMA). I know it's difficult sleeping in a recliner every night only because I spent some time in one at another point in my life when I had some lower back issues. I recently purchased an adjustable bed frame and memory foam mattress which help me. Most of these types of beds have a zero gravity setting (ZG button on a remote). Sleeping in the zero gravity position can reduce pressure from the heart and allow better blood flow throughout the body.

You may have already found the SMA Foundation's website but I thought I would share it just in case you haven't seen it. The site has a link to the DNA Learning Center's Informational SMA Videos here under the General Info about SMA heading: https://smafoundation.org/about-sma/2685-2/

Have you found any therapy or treatments that help with the adult-onset SMA?

REPLY
1 reply
mjpm2406 | @mjpm2406 | Aug 24, 2020
In reply to @johnbishop "@mjpm2406 - Thanks for sharing your your experience and knowledge on the gene testing and finding..." + (show)
@johnbishop

@mjpm2406 - Thanks for sharing your your experience and knowledge on the gene testing and finding out you have adult-onset Spinal Muscular Atrophy (SMA). I know it's difficult sleeping in a recliner every night only because I spent some time in one at another point in my life when I had some lower back issues. I recently purchased an adjustable bed frame and memory foam mattress which help me. Most of these types of beds have a zero gravity setting (ZG button on a remote). Sleeping in the zero gravity position can reduce pressure from the heart and allow better blood flow throughout the body.

You may have already found the SMA Foundation's website but I thought I would share it just in case you haven't seen it. The site has a link to the DNA Learning Center's Informational SMA Videos here under the General Info about SMA heading: https://smafoundation.org/about-sma/2685-2/

Have you found any therapy or treatments that help with the adult-onset SMA?

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Hi John,

Thanks for your response. I did find the SMA Foundation website. I actually called them about 9 AM today. No answer so I left my phone #. So many questions as I was only diagnosed a month ago based on the Invitae genetics test. My main problem now is finding a geneticist or neurologist who specializes in Type 4 SMA. I have not been able to find a specialist on Long Island. Several are "pediatric only" practices because most SMA cases involve young children. The CMT thing is tolerable because I know what to expect based on my family history with this disease. To complicate these two disorders, I also have MDS/MPN-RS-T which is an extremely rare blood cancer. I got that from exposure to toxins at Camp LeJeune, NC and from exposure to Dioxin in Vietnam. While I suspect those same toxins may be responsible for the SMA I'll never know for sure. I do know that I am missing the SMN1 gene and now I'm being tested to see how effective the backup SMN2 gene is working. My research indicates that the SMN2 gene normally does not produce enough protein to make up for the loss of the SMN1 gene. But I'll leave that up to the specialist, if I can find one on Long Island or NYC.

REPLY
1 reply
Mentor
John, Volunteer Mentor | @johnbishop | Aug 24, 2020
In reply to @mjpm2406 "Hi John, Thanks for your response. I did find the SMA Foundation website. I actually called..." + (show)
@mjpm2406

Hi John,

Thanks for your response. I did find the SMA Foundation website. I actually called them about 9 AM today. No answer so I left my phone #. So many questions as I was only diagnosed a month ago based on the Invitae genetics test. My main problem now is finding a geneticist or neurologist who specializes in Type 4 SMA. I have not been able to find a specialist on Long Island. Several are "pediatric only" practices because most SMA cases involve young children. The CMT thing is tolerable because I know what to expect based on my family history with this disease. To complicate these two disorders, I also have MDS/MPN-RS-T which is an extremely rare blood cancer. I got that from exposure to toxins at Camp LeJeune, NC and from exposure to Dioxin in Vietnam. While I suspect those same toxins may be responsible for the SMA I'll never know for sure. I do know that I am missing the SMN1 gene and now I'm being tested to see how effective the backup SMN2 gene is working. My research indicates that the SMN2 gene normally does not produce enough protein to make up for the loss of the SMN1 gene. But I'll leave that up to the specialist, if I can find one on Long Island or NYC.

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@mjpm2406 Another tool I've found helpful when researching medical conditions and the latest research is Google Scholar (https://scholar.google.com/). It allows you to display the results by the newest by select the year at the left side of the results. Here's the results that were found using "adult onset SMA":
-- https://scholar.google.com/scholar?as_vis=1&q=adult+onset+SMA&hl=en&as_sdt=1,24&as_ylo=2020

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