Small Fiber Neuropathy

Posted by lisadog33 @lisadog33, Mar 28, 2017

I have been diagnosed with Small Fiber Neuropathy. My problem is this. Since before they diagnosed me, I was having other symptoms that I thought were not related including loss of appetite/weight loss, bladder control, bowel control, problem with eyesight at times, tremors, sleep issues among some other things. I was told by my Neurologist that those things are not related to small fiber neuropathy but when I look it up, it says it can affect your autonomic nervous system. What is the truth. I am having a heck of a time with bladder and bowel issues as well as either sleeping through the alarm or not sleeping at all. I hope someone can shed some light on this for me. Thank you.

@teetee7

I am glad the Lyrica is helping a little bit. Were you suffering with this for a while, prior to your diagnosis? Have you had any injuries, or did this just start happening out of nowhere?

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This started as my feet were numb with no pain and then the pain would come and go. Then the numbness got deeper, if that makes since and the pain was constant. I was suffering with this for about two years before my diagnosis. My dr has literally tested me for everything and aside from ISFN I am a healthy 45 year old male. It all started about five to six years ago.

Liked by teetee7

Yes, that makes sense about feeling "deeper".

I used to go back and forth in my mind thinking, "Well, I am glad I don't have diabetes or some other disease that is causing all of this…but, where do we go from here"?

You will read through other posts on here about what has worked for others, to help with their SFN pain.

I really do hope you can find extra relief. I am always looking, too.

TeeTee

@jasont

@lisalucier i take an opioide and Lyrica, which the combo of the two give me some relief, its not 100% but at least i can live life. i have tried some pain creams which also helped but for only 30 minutes or so. i just really wish my Doctors or anyone can tell me why i have this, it is so frustrating that they cant and that there is no cure.

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Hi Jason. You said your symptoms started 6 years ago. Anything traumatic happen physically or otherwise 7-8+ years ago? Sometimes the underlying issue/cause is well before the symptoms manifest. Finding out the underlying cause is critical but to be honest, sometimes that’s extremely difficult to answer.

One thing that I am curious about is the skin fiber density ranges in SFN. Does anyone know what the density ranges should be for a normal non SFN patient at the lower leg?

@jordanabrams30

One thing that I am curious about is the skin fiber density ranges in SFN. Does anyone know what the density ranges should be for a normal non SFN patient at the lower leg?

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@jordonabrams30 Poke around this website where you may find an answer to your question.

@steeldove

@jordonabrams30 Poke around this website where you may find an answer to your question.

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@jordonabrams30 https://neuropathycommons.org

@steeldove thanks for sending that over, as I am familiar with Neuropathycommons. I have however never seen it posted on their site the ranges? Any guidance on where I am missing it is greatly appreciated.

@jordanabrams30

@steeldove thanks for sending that over, as I am familiar with Neuropathycommons. I have however never seen it posted on their site the ranges? Any guidance on where I am missing it is greatly appreciated.

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@jordonabrams30 Why not give a call to Dr. Oaklanders office and ask your question? https://www.massgeneral.org/doctors/doctor.aspx?id=17253#

@jordanabrams30

One thing that I am curious about is the skin fiber density ranges in SFN. Does anyone know what the density ranges should be for a normal non SFN patient at the lower leg?

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@jordanabrams30 I'm not sure about the ranges but there is a really good explanation of the test here:

Epidermal Nerve Fiber Density Testing : An Overview
https://bakodx.com/epidermal-nerve-fiber-density-testing-an-overview/

@johnbishop

Hi @jump, Welcome to Mayo Clinic Connect. You mentioned you have to be on prednisone the rest of your life along with gabapentin and pain meds. I have small fiber peripheral neuropathy but I only have the numbness and there are no drugs that help with it. I take some over the counter supplements but it's not a cure and doesn't make the numbness go away. I do believe they may have slowed down the progression but it's subjective on my part. While I don't have pain with my neuropathy, I have had 2 occurrences of polymyalgia rheumatica (PMR) that were extremely painful and was on prednisone both times but was able to taper off once the PMR went into remission. I think each of us deal with pain a little different and a lot of members here have found different treatments that help.

You may want to read the following discussion and see how other members are dealing with the pain associated with neuropathy.

Groups > Neuropathy > Living with Neuropathy – Welcome to the group
https://connect.mayoclinic.org/discussion/living-with-neuropathy-welcome-to-the-group/

Are you able to share a little more about your diagnosis and any other treatments you've tried?

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Thank you for this.

Just thought I would share the next great hope for a cure outside of Winsantor: http://www.regenacy.com

@steeldove

It may be small fiber polyneuropathy. Do a search to find more about the work being done by Louise Oaklander, MD, PhD in Boston. Cbeck neuropathycommons..org

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i also have SFN and looked at Louise oaklanders videos. she says that ivig is effective in 63% of cases and cortico steriods in 67% but when i asked 2 nyc drs that speicalize in in sfn they said no. anyone can comment?

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