1. < Neuropathy

Who else has Autonomic Neuropathy?

Posted by mstephen @mstephen, Mar 25, 2018

The Mayo Clinic in Phoenix diagnosed me with Autonomic Neuropathy in 2014. I don't see any reference to that form in any of the information or discussions. I know it effect's my balance, body temperature variance and possibly thinking. Any one have this diagnosis? Seems to be worsening as I age.

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

robyn | @boltz7555 | May 12, 2022
In reply to @gregoria "I live in Europe and I'm suffering SFN with neuropathic pain in both feet and hands..." + (show)
@gregoria

I live in Europe and I'm suffering SFN with neuropathic pain in both feet and hands and some autonomic stuff as night sweating, swollen blood vessel and some digestive issues, along with dried eyes and mouth.. Etc I've seeing a lot of specialists , many of whom suspect I have SFN but I have not still a diagnosis. Today at last I'm having a corneal confocal microscopy procedure. Does anyone know if this microscophe is enough to confirm this pathology?? How can I know it has an autoimmune origin?? What else can I do??I have also other autoimmune diseases such as hipotiroidism and gastritis... But they have discarded others..Im only taking lyrica and tryptizol and a lot of vitamines, but this thing is progressing. It started in my right leg 2 years ago, are there any more things to try on?? I'm getting bored.

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@gregoria Hello. I was diagnosed with small fiber neuropathy by a skin punch biopsy. I’ve been tested for other autoimmune diseases as my doctor is trying to find an underlying cause to the SFN. I was just tested for Sjögren’s syndrome (pending results) as it can cause SFN. Some of the symptoms you’re experiencing (dry eyes/mouth) are classic symptoms of Sjögren’s syndrome. If they can find the underlying cause to your SFN, they can treat that, which could potentially improve your SFN symptoms. I hope you find answers. ~Robyn

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1 reply
obackus | @obackus | May 13, 2022

I have been diagnosed with Small Fiber Polyneuropathy after 12 years of issues. I also have autonomic dysfunction that affects my digestive, heart and bladder. I take pregabalin and duloxitine for the neuropathy, heart and blood pressure meds for the heart issue (tachnycardia) and probiotics for my digestive issues with Reglan if needed for nausau. I have found this to be a very long road with many dead ends until I was finaly diagnosed after having autonomic testing in Boston by Dr. Peter Novak. I was told while I was there that Dr. Novak travels the world to find answers and best practices for autonomic neuropathy issues so I am one of his patients now. I have also been tested for several autoimmunes and everything under the sun with no clear answers.

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2 replies
Carlos Sierra | @carlossierra1287 | May 13, 2022
In reply to @lloydje1 "Begin following a whole food plant based, low-fat diet. Have your vitamin B and D levels..." + (show)
@lloydje1

Begin following a whole food plant based, low-fat diet. Have your vitamin B and D levels checked they’re usually low for people with autoimmune disease. B vitamins are needed to rebuild the nerve sheath. A synthetic B vitamin, NAC is scientifically proven to be better at rebuilding nerve sheath. Along with whatever type drugs the doctor gives you, try to heal your gut and microbiome by feeding it lots of green leafy vegetables.

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Hi

Not B-6 correct

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1 reply
lloydje1 | @lloydje1 | May 13, 2022
In reply to @carlossierra1287 "Hi Not B-6 correct" + (show)
@carlossierra1287

Hi

Not B-6 correct

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I’m not sure what you’re asking about B6? Here’s from online, “While vitamin B1 acts as a site-directed antioxidant, vitamin B6 balances nerve metabolism, and vitamin B12 maintains myelin sheaths.” I read that an artificial B vitamin called NAC was scientifically proven to work better than B vitamins. I couldn’t find NAC by itself in Walmart but, I found a product called Nervine that contains NAC which I began taking. I read mixed reviews about Nervine, some it did nothing for; others it took a few weeks but their neuropathy subsided. After I finished a 30 day supply the nerve pain was pretty much gone so, I didn’t buy more. Then my doctor gave me a B-12 vitamin shot. I was also taking a lot of other vitamins and began consuming copious amounts of leafy green veggies in smoothies, eating more salads and veggies, quit caffiene, sugar, etc. By the time that I got into the rheumatologist for my RA, the neuropathy was already gone.

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2 replies
dipperlip1 | @dipperlip1 | May 13, 2022
In reply to @lloydje1 "I’m not sure what you’re asking about B6? Here’s from online, “While vitamin B1 acts as..." + (show)
@lloydje1

I’m not sure what you’re asking about B6? Here’s from online, “While vitamin B1 acts as a site-directed antioxidant, vitamin B6 balances nerve metabolism, and vitamin B12 maintains myelin sheaths.” I read that an artificial B vitamin called NAC was scientifically proven to work better than B vitamins. I couldn’t find NAC by itself in Walmart but, I found a product called Nervine that contains NAC which I began taking. I read mixed reviews about Nervine, some it did nothing for; others it took a few weeks but their neuropathy subsided. After I finished a 30 day supply the nerve pain was pretty much gone so, I didn’t buy more. Then my doctor gave me a B-12 vitamin shot. I was also taking a lot of other vitamins and began consuming copious amounts of leafy green veggies in smoothies, eating more salads and veggies, quit caffiene, sugar, etc. By the time that I got into the rheumatologist for my RA, the neuropathy was already gone.

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My Neurologist told me that my neuropathy was caused by high level of B 6 in my system. That was 2 years ago. He took me off all supplements that contained B6. My B6 level dropped considerably after 6 month and stayed low. However my neuropathy is getting worse.

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2 replies
lloydje1 | @lloydje1 | May 13, 2022
In reply to @dipperlip1 "My Neurologist told me that my neuropathy was caused by high level of B 6 in..." + (show)
@dipperlip1

My Neurologist told me that my neuropathy was caused by high level of B 6 in my system. That was 2 years ago. He took me off all supplements that contained B6. My B6 level dropped considerably after 6 month and stayed low. However my neuropathy is getting worse.

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That’s awful! Doctors say the darnedest things — lol!
Its not just B6 that helps, its the B-complex along with other nutrients. I read people with RA get low in B vitamins because of low stomach acid preventing proper digestion of proteins. There are youtube doctor videos about neuropathy that give good information. If I were in your shoes, I’d experiment with taking supplements like those in Nervine. The proof is in the pudding. Its better to get vitamins from foods but I’ve recently gone vegetarian so, B12 needs to be supplemented.

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Mentor
John, Volunteer Mentor | @johnbishop | May 14, 2022
In reply to @dipperlip1 "My Neurologist told me that my neuropathy was caused by high level of B 6 in..." + (show)
@dipperlip1

My Neurologist told me that my neuropathy was caused by high level of B 6 in my system. That was 2 years ago. He took me off all supplements that contained B6. My B6 level dropped considerably after 6 month and stayed low. However my neuropathy is getting worse.

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@dipperlip1, I'm sorry to hear the neuropathy has gotten worse after 2 years. From what I've read B6 toxicity induced neuropathy can resolve in 6 months but it may depend on how long the B6 levels were high in your system. Here's some information on the topic.

"Neuropathy from massive exposures can cause long-term disability or death. Neurologic dysfunction improves following discontinuation of vitamin B supplementation and usually resolves within six months. Jan 10, 2022" --- Vitamin B6 Toxicity: https://www.ncbi.nlm.nih.gov/books/NBK554500/

The Foundation for Peripheral Neuropathy lists some alternative or complementary treatments for neuropathy -- https://www.foundationforpn.org/treatments/
Have you looked into any alternative or complementary treatments?

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1 reply
frattmaa | @frattmaa | May 14, 2022
In reply to @obackus "I have been diagnosed with Small Fiber Polyneuropathy after 12 years of issues. I also have..." + (show)
@obackus

I have been diagnosed with Small Fiber Polyneuropathy after 12 years of issues. I also have autonomic dysfunction that affects my digestive, heart and bladder. I take pregabalin and duloxitine for the neuropathy, heart and blood pressure meds for the heart issue (tachnycardia) and probiotics for my digestive issues with Reglan if needed for nausau. I have found this to be a very long road with many dead ends until I was finaly diagnosed after having autonomic testing in Boston by Dr. Peter Novak. I was told while I was there that Dr. Novak travels the world to find answers and best practices for autonomic neuropathy issues so I am one of his patients now. I have also been tested for several autoimmunes and everything under the sun with no clear answers.

Jump to this post

I call my SFSN and Autonomic Neuropathy, death by a million papercuts. If it’s not one thing it another. Grrrrr

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rexsan20 | @rexsan20 | May 14, 2022
In reply to @boltz7555 "@gregoria Hello. I was diagnosed with small fiber neuropathy by a skin punch biopsy. I’ve been..." + (show)
@boltz7555

@gregoria Hello. I was diagnosed with small fiber neuropathy by a skin punch biopsy. I’ve been tested for other autoimmune diseases as my doctor is trying to find an underlying cause to the SFN. I was just tested for Sjögren’s syndrome (pending results) as it can cause SFN. Some of the symptoms you’re experiencing (dry eyes/mouth) are classic symptoms of Sjögren’s syndrome. If they can find the underlying cause to your SFN, they can treat that, which could potentially improve your SFN symptoms. I hope you find answers. ~Robyn

Jump to this post

What doctor test for those things? small fiber neuropathy

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2 replies
Mentor
John, Volunteer Mentor | @johnbishop | May 14, 2022
In reply to @rexsan20 "What doctor test for those things? small fiber neuropathy" + (show)
@rexsan20

What doctor test for those things? small fiber neuropathy

Jump to this post

A neurologist normally diagnoses small fiber neuropathy.

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