Just Diagnosed with Small Fiber Neuropathy

Posted by boo55 @boo55, Feb 1, 2019

Hi . I am a bit scared here. Had positive skin biopsy for small fiber. What tests will the Neuro ask for to find causation? Was diagnosed prediabetic in Fall. My Dad had similar issues and eventually lost a toe. Always felt he was walking ” on fire “. My feet have similar issues. This is just one big Ick. Boo

Liked by teetee7, jasont, Mrs. H

@lauraj155

I had a normal EMG yesterday so I don’t have large fiber involvement. The Neurologist did the skin biopsy to see if it is small fiber which I think it might be. I hope to get results in a week or so. I had a normal EMG in 2005 when it first started however they didn’t have the skin biopsy then or it wasn’t offered. The pain actually lessened through the years but now it’s back with a vengeance. I also was diagnosed with Erythromelagia but it is relatively mild but the other nerve pain is vicious right now and am unable to do much. The Neurologist does not know what is causing the fasciculations in feet, toes, legs. I’m just wondering if it’s from nerve damage although the fasciculations usually occur in large fiber. It’s all so strange and difficult to figure out. Thank you for any insight you may have. -Laura

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Hi, @lauraj155 – Just wanted to let you know I moved your discussion and combined it with an existing discussion in the Neuropathy group "Just Diagnosed with Small Fiber Neuropathy." This was to get you in discussion with some members who have small fiber neuropathy and see if others may have experienced fasciculations (twitching) with their disease and why this might be occurring with small fiber neuropathy. Hoping that @jakedduck1 @johnbishop @albiet @rwinney @pepperbeau might return to offer any insights on this.

Have you looked at getting another opinion about the cause of the fasciculations? Will you be undergoing treatment for these?

Liked by Leonard, rwinney

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Hi @lauraj155 — I'm not familiar with fasciculations but I can imagine that it's disconcerting if it's painful. I did find a little information that may be helpful but I'm not sure.

Another Perspective on Fasciculations: When is it not Caused by the Classic form of Amyotrophic Lateral Sclerosis or Progressive Spinal Atrophy?
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4192433/

Is it possible as @lisalucier mentioned to get a second opinion if your neurologist does not know what is causing it? Maybe they can provide a referral?

Liked by Leonard

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@johnbishop, @lisalucier – Thank you for responding to my question. I have been extremely frustrated with the level of care that I have received from the Neurologist. I cannot find anything about fasciculations with small fiber neuropathy. I have it mainly in my left foot and big toe where most of the nerve pain is. I can barely walk due to the pain, however my EMG appears normal and still waiting on small fiber results. Yes, I will probably have to seek a Neurologist out of network for a second opinion. I appreciate your help. -Laura

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@cinbo

I have sfn but I don't believe I have gluten sensitivity. My neurologist recommended I greatly reduce carbs and sugar. What a difference it has made! My feet and calves still burn but not near as intensely. On special occasions, I will have a wine, dessert or pizza and then notice an increase in burning by the next morning.

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Hi I am basically on the verge of being diagnosed… is your life managable with SFN? How long have you had it? Can you maintain some resemblence of a normal life sometime after onset of symptoms I am petrified?

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@reecey

Hi I am basically on the verge of being diagnosed… is your life managable with SFN? How long have you had it? Can you maintain some resemblence of a normal life sometime after onset of symptoms I am petrified?

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Hello @reecey, welcome to Connect. I can certianly understand your being scared by the diagnosis. I have had small fiber peripheral neuropathy for well over 20 years and still have a somewhat normal life for an old guy. The more you learn about your condtion, the better chances are that you will find something that will help you. Connect members are a great resource for you. Here are a few other discussions you may want to read through to learn what others have shared and what has helped them.

> Groups > Neuropathy > Ideas for pain relief from Small Fiber Neuropathy (SFN)
https://connect.mayoclinic.org/discussion/ideas-for-pain-from-small-fiber-neuropathy/

> Groups > Neuropathy > Small Fiber Neuropathy?
https://connect.mayoclinic.org/discussion/small-fiber-neuropathy-3/

@reecey you mentioned you are on the verge of being diagnosed. Are you able to share a little more about your symptoms?

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@reecey

Hi I am basically on the verge of being diagnosed… is your life managable with SFN? How long have you had it? Can you maintain some resemblence of a normal life sometime after onset of symptoms I am petrified?

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Hi, @reecey – I wanted to add my welcome to Mayo Clinic Connect and also invite @lauraj155 @boo55 @pepperbeau @albiet @rwinney to come greet you and offer any support and thoughts related to your concerns about the manageability of small fiber neuropathy.

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@reecey

Hi I am basically on the verge of being diagnosed… is your life managable with SFN? How long have you had it? Can you maintain some resemblence of a normal life sometime after onset of symptoms I am petrified?

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Hello and welcome. May I ask how and when will you be finding out your diagnosis? Before I jump in with two feet for you I would like to understand a bit more…if you are willing to share. You ask great questions and came to the right place for support, knowledge and encouragement.
Rachel

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I have had diagnosis of fibromyalgia since 2003.
Lots of other health diagnoses with chronic pain.
Last January both of my feet began to go numb with nerve pain after a nine day hospital stay with critical low sodium. Rheumatoid arthritis doctor sent me for punch biopsy of both feet. My lab
Pathology returned a diagnosis of small fiber
Polyneuropathy. My small nerves in both feet are dying as it also travels up both legs. In research I read it can affect the autonomic nervous system. I have all the symptoms heart arrhythmia’s, sluggish bowel,Retention post urine ect. Awaiting an appointment that I made 4 months ago to see
A neurologist that has a reputation for helping
With symptoms of problems that have not been
Researched or known a lot about. In my research
It saids the underlying problem is what causes
The symptoms. I am desperately trying to have
A doctor diagnosis my problem so maybe I can get pain relief and understand more. Does anyone else on site have these symptoms or have had a punch biopsy with this diagnosis?
How are you coping? I Am very interested in your
Case and opinion. Thanks for taking the time to read.

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@pieface1971

I have had diagnosis of fibromyalgia since 2003.
Lots of other health diagnoses with chronic pain.
Last January both of my feet began to go numb with nerve pain after a nine day hospital stay with critical low sodium. Rheumatoid arthritis doctor sent me for punch biopsy of both feet. My lab
Pathology returned a diagnosis of small fiber
Polyneuropathy. My small nerves in both feet are dying as it also travels up both legs. In research I read it can affect the autonomic nervous system. I have all the symptoms heart arrhythmia’s, sluggish bowel,Retention post urine ect. Awaiting an appointment that I made 4 months ago to see
A neurologist that has a reputation for helping
With symptoms of problems that have not been
Researched or known a lot about. In my research
It saids the underlying problem is what causes
The symptoms. I am desperately trying to have
A doctor diagnosis my problem so maybe I can get pain relief and understand more. Does anyone else on site have these symptoms or have had a punch biopsy with this diagnosis?
How are you coping? I Am very interested in your
Case and opinion. Thanks for taking the time to read.

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Hello @pieface1971. I moved your discussion and combined it with an existing discussion titled, "Just diagnosed with small fiber neuropathy." I did this so you could read through some of the members' previous experiences with receiving a diagnosis of SFN and so the members discussing it would see your post as well. If you are responding by email, you can click on VIEW & REPLY to be brought to the new discussion. As you work through some of your new symptoms and diagnosis, there is another active discussion on Connect about how to manage the pain with small fiber neuropathy. You can check that one out here, https://connect.mayoclinic.org/discussion/ideas-for-pain-from-small-fiber-neuropathy/.

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I'd like to invite @boo55 @lauraj155 @lavieauxusa1972 @albiet @peggyn @lorirenee1 to share whether they can relate to any of the symptoms you mentioned you were having, @pieface1971:
– small nerves in both feet are dying as it also travels up both legs
– heart arrhythmias
– sluggish bowel
– retention post urine

They may also have some tips from their own experiences of how they have coped with their symptoms.

@reecey also mentioned being on the verge of being diagnosed with small fiber neuropathy. Do you now have a diagnosis, reecey?

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@lisalucier

I'd like to invite @boo55 @lauraj155 @lavieauxusa1972 @albiet @peggyn @lorirenee1 to share whether they can relate to any of the symptoms you mentioned you were having, @pieface1971:
– small nerves in both feet are dying as it also travels up both legs
– heart arrhythmias
– sluggish bowel
– retention post urine

They may also have some tips from their own experiences of how they have coped with their symptoms.

@reecey also mentioned being on the verge of being diagnosed with small fiber neuropathy. Do you now have a diagnosis, reecey?

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I have slow heart rate. I have a loop recorder to monitor the heart. For sluggish bowel, I use Metamucil. I have been taking magnesium lately, which seems to keep the bowels moving without Metamucil. For the urine issue, you could get a device implanted in the lower part of your back that would regulate the urine output. I have not done that yet.

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@swartzki

I have slow heart rate. I have a loop recorder to monitor the heart. For sluggish bowel, I use Metamucil. I have been taking magnesium lately, which seems to keep the bowels moving without Metamucil. For the urine issue, you could get a device implanted in the lower part of your back that would regulate the urine output. I have not done that yet.

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Have you have autonomic testing? I have had a mitral value prolapse for years with tachycardia take beta blocker med to slow it down. My A1C Has been in normal range.
Going to see a neurologist March 10th after waiting five months for appt!! Primary care no help. Feet burning, tingling, walking on fire numb, traveling up lower legs, positive skin
Biopsy last August for small fiber neuropathy.
Calcium elevated on no calcium supplements.
Constant battle to know what to eat. Sodium
Stays low. In Hospital for low sodium nine days
Jan 2019 was critical almost did not survive.
I am constantly struggling with nerve pain
Symptoms. Thank God for Jesus!!

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@pieface1971

Have you have autonomic testing? I have had a mitral value prolapse for years with tachycardia take beta blocker med to slow it down. My A1C Has been in normal range.
Going to see a neurologist March 10th after waiting five months for appt!! Primary care no help. Feet burning, tingling, walking on fire numb, traveling up lower legs, positive skin
Biopsy last August for small fiber neuropathy.
Calcium elevated on no calcium supplements.
Constant battle to know what to eat. Sodium
Stays low. In Hospital for low sodium nine days
Jan 2019 was critical almost did not survive.
I am constantly struggling with nerve pain
Symptoms. Thank God for Jesus!!

Jump to this post

Diagnosed with small fiber peripheral neuropathy 5 years ago when my feet would get hot at night under the covers. The Neurologist said I had it a long time before I was diagnosed. He confirmed the diagnosis via a biopsy at my foot, knee and hip. My uncle had it, my sister had it and my brother has it. The good thing is my Neurologist told me it won't kill me. There is no cure and it will only get worse with time. A few months later the pain started and it has only gotten worse. Now my feet feel like they are on fire, shooting pains, pins and needles and numbness from my foot halfway to my knee. No medications work for me, but work great for my brother. I discovered that if I reduce my carb intake, exercise for 30 minutes 3 times a week, stay off my feet and stay away from medications that can raise my blood sugar, I have less pain. I have to keep my feet and hands out from under the covers at night or the pain wakes me up. Frequently, I have to keep soak socks in tap water and put them on my feet when the pain breaks through the pain medication.

There is nothing to be scared of. Just make sure the doctors deal with your pain. With out pain medication I would be in the ER because of the pain. The opioid crisis has doctors afraid to prescribe opioids for people with cronic pain. I would gladly stop taking opioids tomorrow if they had something else to ease my pain.

I have a new pain management doctor and he is going to try injecting some numbing medication just above my feet to help with the pain. If that helps he will install some electronic device above each foot. Has anyone else tried this approach?

Before I was diagnosed with neuropathy I had a desk job for 20+ years, I had been a runner for 15 years and ran a few marathons. I also lifted weights and spent a lot of time outside. Being healthy didn't keep me from getting the disease.

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@fredjan2016

Diagnosed with small fiber peripheral neuropathy 5 years ago when my feet would get hot at night under the covers. The Neurologist said I had it a long time before I was diagnosed. He confirmed the diagnosis via a biopsy at my foot, knee and hip. My uncle had it, my sister had it and my brother has it. The good thing is my Neurologist told me it won't kill me. There is no cure and it will only get worse with time. A few months later the pain started and it has only gotten worse. Now my feet feel like they are on fire, shooting pains, pins and needles and numbness from my foot halfway to my knee. No medications work for me, but work great for my brother. I discovered that if I reduce my carb intake, exercise for 30 minutes 3 times a week, stay off my feet and stay away from medications that can raise my blood sugar, I have less pain. I have to keep my feet and hands out from under the covers at night or the pain wakes me up. Frequently, I have to keep soak socks in tap water and put them on my feet when the pain breaks through the pain medication.

There is nothing to be scared of. Just make sure the doctors deal with your pain. With out pain medication I would be in the ER because of the pain. The opioid crisis has doctors afraid to prescribe opioids for people with cronic pain. I would gladly stop taking opioids tomorrow if they had something else to ease my pain.

I have a new pain management doctor and he is going to try injecting some numbing medication just above my feet to help with the pain. If that helps he will install some electronic device above each foot. Has anyone else tried this approach?

Before I was diagnosed with neuropathy I had a desk job for 20+ years, I had been a runner for 15 years and ran a few marathons. I also lifted weights and spent a lot of time outside. Being healthy didn't keep me from getting the disease.

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Fred I am so sorry for your pain I hope you get the medication you need

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Thank you so very much for sharing your story with
Me. It’s was kind of you to take the time. My pain
Drags me down so bad some mornings it takes so much effort to get out of my bed because once I start walking the pain will intensify. You are so right it’s difficult to get doctors to listen and understand our pain. The only thing that keeps me going is I have JESUS and am a Christian and I know He will get me through this world and take me to my Heavenly Home with Him One day where there will be no more pain, no sadness, no tears. Thank God He gave us a Savior JESUS Christ Our Lord!! I am so sorry about your pain I give you my empathy and understanding. I pray peace, pain relief and better days over you in Jesus Name🙏

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