Small Fiber Neuropathy: What helps?

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.

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

steeldove | @steeldove | Feb 27, 2019

In reply to @steeldove "@jordonabrams30 Poke around this website where you may find an answer to your question." + (show)

@jordonabrams30 https://neuropathycommons.org

jordanabrams30 | @jordanabrams30 | Feb 27, 2019

@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.

steeldove | @steeldove | Feb 27, 2019

In reply to @jordanabrams30 "@steeldove thanks for sending that over, as I am familiar with Neuropathycommons. I have however never..." + (show)

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

John, Volunteer Mentor | @johnbishop | Feb 28, 2019

In reply to @jordanabrams30 "One thing that I am curious about is the skin fiber density ranges in SFN. Does..." + (show)

@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/

mountaingirl1 | @mountaingirl1 | Mar 9, 2019

In reply to @johnbishop "Hi @jump, Welcome to Mayo Clinic Connect. You mentioned you have to be on prednisone the..." + (show)

Thank you for this.

jordanabrams30 | @jordanabrams30 | Mar 15, 2019

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

albiet | @albiet | Apr 4, 2019

In reply to @steeldove "It may be small fiber polyneuropathy. Do a search to find more about the work being..." + (show)

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?

aruhela2021 | @aruhela2021 | Mar 5, 2021

Hello everyone. I was recently diagnosed with small
Fiber neuropathy in thigh and calf( has skin biopsy) with autoimmune etiology - antibodies to voltage gated potassium channel. Cancer has been ruled out . I have been dealing with right thigh pain , spasms stiffness cramps and burning pain since 6 years now ,finally got diagnosed.
Since last week I have also have developed same symptoms in the right calf as well. Can’t walk without a limp now, it’s so painful. I am currently
On carbamazepine 200 mg twice a day(it did help with my thigh stiffness to certain extent) I am being planned for IVIG waiting for insurance approval . Has anyone received such diagnosis and had any good response to IVIG?
Thank you in advance
Wishing all of you good health

steeldove | @steeldove | Mar 5, 2021

In reply to @aruhela2021 "Hello everyone. I was recently diagnosed with small Fiber neuropathy in thigh and calf( has skin..." + (show)

@arulhearuhela2021 Have you been checked for meralgia paresthetica which causes pain in the thighs?

aruhela2021 | @aruhela2021 | Mar 5, 2021

In reply to @steeldove "@arulhearuhela2021 Have you been checked for meralgia paresthetica which causes pain in the thighs?" + (show)

Thanks for your reply.
Yes I have been checked for that through nerve conduction study. The condition I have is called neuromyotonia and it explains all my symptoms and clinical course. I just want to know what are my odds of responding to IVIG and hear someone’s experience ,as the treatment will be initiated 6 years into my illness.