Anyone here dealing with peripheral neuropathy?

Posted by rabbit10 @rabbit10, Apr 9, 2016

Anyone here dealing with peripheral neuropathy?

@dwjohn

I began experiencing autonomic/peripheral neuropathy following chemo therapy treatment for cancer. Fortunately I do not have pain, but need a walking stick to keep my balance. I'm wondering if there are some treatments people have found effective.

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Hello @dwjohn I've not heard of treatments for balance problems with neuropathy but the Foundation for Peripheral Neuropathy does have some exercises to help with balance here:

https://www.foundationforpn.org/living-well/lifestyle/exercise-and-physical-therapy/#balance

John

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I have been dealing with severe small fiber neuropathy in my hands, feet, arms, and legsand autonomic neuropathy for four months now. It occurred right after I received a cervical steroid (Kenalog) injection for my back pain (which is also still very bad). It keeps getting worse. I have just been to the Cleveland Clinic and they have no idea what it is or how to cure it. I also feel like I have energy running all through my body and my heart races. This seems to coincide when the pain is the worst. A biopsy showed no nerve fiber damage in my leg. Is it possible that my nervous system is not damaged, but just very overactive? Has anyone else had this?

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Hello @cwallen9, I have small fiber PN in my feet and legs but I don't have any pain. It sounds like the cervical steroid injection for the back back did not help? There is some information on the injections on the Mayo Clinic website here:

Epidural steroid injections: Why limited dosing?
https://www.mayoclinic.org/diseases-conditions/back-pain/expert-answers/epidural-steroid-injections/faq-20058277

You mentioned you also have autonomic neuropathy? It could by that you are experiencing symptoms from the autonomic neuropathy.
Mayo Clinic – Autonomic neuropathy – Diagnosis & Treatment:
https://www.mayoclinic.org/diseases-conditions/autonomic-neuropathy/diagnosis-treatment/drc-20369836

I'm tagging a few members who have discussed back pain to see if they have any suggestions for you. @grandmar @jenniferhunter @artscaping do you have any information or suggestions you can share with @cwallen9 ?

I’m not sure if it is an option for you but if it is, the Mayo Clinic is very good at diagnosing health issues that are difficult to diagnose. If you would like to seek help from Mayo Clinic, you can contact one of their appointment offices. The contact information for Minnesota, Arizona and Florida can be found here:

Mayo Clinic Contact Information: https://www.mayoclinic.org/appointments

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@johnbishop

Hello @cwallen9, I have small fiber PN in my feet and legs but I don't have any pain. It sounds like the cervical steroid injection for the back back did not help? There is some information on the injections on the Mayo Clinic website here:

Epidural steroid injections: Why limited dosing?
https://www.mayoclinic.org/diseases-conditions/back-pain/expert-answers/epidural-steroid-injections/faq-20058277

You mentioned you also have autonomic neuropathy? It could by that you are experiencing symptoms from the autonomic neuropathy.
Mayo Clinic – Autonomic neuropathy – Diagnosis & Treatment:
https://www.mayoclinic.org/diseases-conditions/autonomic-neuropathy/diagnosis-treatment/drc-20369836

I'm tagging a few members who have discussed back pain to see if they have any suggestions for you. @grandmar @jenniferhunter @artscaping do you have any information or suggestions you can share with @cwallen9 ?

I’m not sure if it is an option for you but if it is, the Mayo Clinic is very good at diagnosing health issues that are difficult to diagnose. If you would like to seek help from Mayo Clinic, you can contact one of their appointment offices. The contact information for Minnesota, Arizona and Florida can be found here:

Mayo Clinic Contact Information: https://www.mayoclinic.org/appointments

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Good suggestion for me too. I'm waiting to hear if a particular neurologist at Brigham &Women's will take me on but now know I have another option at Mayo. I have CIDP and SFN, both worsening.

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@sherlock

Good suggestion for me too. I'm waiting to hear if a particular neurologist at Brigham &Women's will take me on but now know I have another option at Mayo. I have CIDP and SFN, both worsening.

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@sherlock If you're near Boston, see if you can get an appointment with Dr. Louise Oaklander https://neuropathycommons.org/anne-louise-oaklander-md-phd

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Hello everyone. I am new here. I have just been officially diagnosed with severe idiopathic small fiber neuropathy. I had the biopsy done as well and multiple of test including blood and urine test to try and find a cause. They were not able to find a cause. I have it in my feet, legs, midsection including most of the groin, hands, arms, and face. Always have tingling in those regions except my upper legs and groin I am numb. Hand and feet are the worst when it flares up. It's like I am repeatedly being stabbed with knives nonstop for the length of the flare up. The flare ups last anywhere between 10 minutes to many hours.

I have been having that feeling for years but I have also has cervical and lumbar issues which both required surgery. Had fusion of the c5-c7 and anterior/posterior fusion of the L3-S1. These did not cause the small fiber according to the doctors. I have to go for my sixth surgery in 6 years in a week and a half to get a spinal cord stimulator for the lumbar region, it does provide some help with the pain in my feet. My bladder is shot and had a cystoscopy and video urodynamic study and my bladder muscles barely function. I have to go for the trial of interstim stimulator to see if it helps. I also have to meet with the pain specialist to discuss long term for dealing with the pain. Gabapentin does not work and I get bad side effects.

Sorry for going on and on.
Thank you for listening (reading).
Dustin

REPLY
@dustins76

Hello everyone. I am new here. I have just been officially diagnosed with severe idiopathic small fiber neuropathy. I had the biopsy done as well and multiple of test including blood and urine test to try and find a cause. They were not able to find a cause. I have it in my feet, legs, midsection including most of the groin, hands, arms, and face. Always have tingling in those regions except my upper legs and groin I am numb. Hand and feet are the worst when it flares up. It's like I am repeatedly being stabbed with knives nonstop for the length of the flare up. The flare ups last anywhere between 10 minutes to many hours.

I have been having that feeling for years but I have also has cervical and lumbar issues which both required surgery. Had fusion of the c5-c7 and anterior/posterior fusion of the L3-S1. These did not cause the small fiber according to the doctors. I have to go for my sixth surgery in 6 years in a week and a half to get a spinal cord stimulator for the lumbar region, it does provide some help with the pain in my feet. My bladder is shot and had a cystoscopy and video urodynamic study and my bladder muscles barely function. I have to go for the trial of interstim stimulator to see if it helps. I also have to meet with the pain specialist to discuss long term for dealing with the pain. Gabapentin does not work and I get bad side effects.

Sorry for going on and on.
Thank you for listening (reading).
Dustin

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Dustin .. my heart goes out to you and nothing but respect for your insurance.
I can’t add anything but put you in my oraters

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@prudence

Dustin .. my heart goes out to you and nothing but respect for your insurance.
I can’t add anything but put you in my oraters

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Prayers

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@prudence

Dustin, I really feel for you and will add you to my prayers. I have idiopathic peripheral neuropahathy in my hands and feet. Sometimes they burn like they are on fire. The doctors ran some blood tests, but that is all they have done leaving me with no relief. Your troubles make mine seem minimal. Bless you.

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@prudence

Dustin .. my heart goes out to you and nothing but respect for your insurance.
I can’t add anything but put you in my oraters

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Thank you, I appreciate it.

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@cak11555

Dustin, I really feel for you and will add you to my prayers. I have idiopathic peripheral neuropahathy in my hands and feet. Sometimes they burn like they are on fire. The doctors ran some blood tests, but that is all they have done leaving me with no relief. Your troubles make mine seem minimal. Bless you.

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Neuropathy is no joke. We understand what it's like but people who have not experienced it dont understand to the extent of how debilitating it can be. I wish they could find a cause for why we have it so we can fix the issue to get the neuropathy under control.

One thing that helps me deal with the pain is to stay positive and try to keep a smile on my face. Also my almost 4 year old little girl and my very supportive wife helps.

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@dustins76

Hello everyone. I am new here. I have just been officially diagnosed with severe idiopathic small fiber neuropathy. I had the biopsy done as well and multiple of test including blood and urine test to try and find a cause. They were not able to find a cause. I have it in my feet, legs, midsection including most of the groin, hands, arms, and face. Always have tingling in those regions except my upper legs and groin I am numb. Hand and feet are the worst when it flares up. It's like I am repeatedly being stabbed with knives nonstop for the length of the flare up. The flare ups last anywhere between 10 minutes to many hours.

I have been having that feeling for years but I have also has cervical and lumbar issues which both required surgery. Had fusion of the c5-c7 and anterior/posterior fusion of the L3-S1. These did not cause the small fiber according to the doctors. I have to go for my sixth surgery in 6 years in a week and a half to get a spinal cord stimulator for the lumbar region, it does provide some help with the pain in my feet. My bladder is shot and had a cystoscopy and video urodynamic study and my bladder muscles barely function. I have to go for the trial of interstim stimulator to see if it helps. I also have to meet with the pain specialist to discuss long term for dealing with the pain. Gabapentin does not work and I get bad side effects.

Sorry for going on and on.
Thank you for listening (reading).
Dustin

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Hello @dustins76, welcome to Mayo Clinic Connect. I have idiopathic small fiber PN also. Thanks for sharing your health concerns. I think it helps to know that you are not alone. I hope you find some relief with the stimulator.

Can you let us know how the stimulator works for you when you get it?

John

REPLY
@dustins76

Hello everyone. I am new here. I have just been officially diagnosed with severe idiopathic small fiber neuropathy. I had the biopsy done as well and multiple of test including blood and urine test to try and find a cause. They were not able to find a cause. I have it in my feet, legs, midsection including most of the groin, hands, arms, and face. Always have tingling in those regions except my upper legs and groin I am numb. Hand and feet are the worst when it flares up. It's like I am repeatedly being stabbed with knives nonstop for the length of the flare up. The flare ups last anywhere between 10 minutes to many hours.

I have been having that feeling for years but I have also has cervical and lumbar issues which both required surgery. Had fusion of the c5-c7 and anterior/posterior fusion of the L3-S1. These did not cause the small fiber according to the doctors. I have to go for my sixth surgery in 6 years in a week and a half to get a spinal cord stimulator for the lumbar region, it does provide some help with the pain in my feet. My bladder is shot and had a cystoscopy and video urodynamic study and my bladder muscles barely function. I have to go for the trial of interstim stimulator to see if it helps. I also have to meet with the pain specialist to discuss long term for dealing with the pain. Gabapentin does not work and I get bad side effects.

Sorry for going on and on.
Thank you for listening (reading).
Dustin

Jump to this post

I have very similar symptoms for about the last 4 months. I also have bad upper back issues. My short fiber neuropathy started immediately after a cervical spine steroid injection (Kenalog). I just saw a neurologist at the Cleveland Clinic who did not offer any real help. I am thinking of trying IVIG treatments for autoimmune disorder. The Cleveland Clinic doctor thought that I may have an autoimmune disorder. Has anyone tried that?

REPLY
@dustins76

Hello everyone. I am new here. I have just been officially diagnosed with severe idiopathic small fiber neuropathy. I had the biopsy done as well and multiple of test including blood and urine test to try and find a cause. They were not able to find a cause. I have it in my feet, legs, midsection including most of the groin, hands, arms, and face. Always have tingling in those regions except my upper legs and groin I am numb. Hand and feet are the worst when it flares up. It's like I am repeatedly being stabbed with knives nonstop for the length of the flare up. The flare ups last anywhere between 10 minutes to many hours.

I have been having that feeling for years but I have also has cervical and lumbar issues which both required surgery. Had fusion of the c5-c7 and anterior/posterior fusion of the L3-S1. These did not cause the small fiber according to the doctors. I have to go for my sixth surgery in 6 years in a week and a half to get a spinal cord stimulator for the lumbar region, it does provide some help with the pain in my feet. My bladder is shot and had a cystoscopy and video urodynamic study and my bladder muscles barely function. I have to go for the trial of interstim stimulator to see if it helps. I also have to meet with the pain specialist to discuss long term for dealing with the pain. Gabapentin does not work and I get bad side effects.

Sorry for going on and on.
Thank you for listening (reading).
Dustin

Jump to this post

We are listening. You are not just going on and on. Tell us more as you learn more so we have an opportunity to be supportive. Be safe.

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Wondering if a feeling of being sweaty, clammy and damp all the time even though my clothes and skin feels dry is a neural phenomenon.

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