Past Discussion: test to determine cause of Small Fiber Neuropathy

Posted by lakemom394 @lakemom394, Aug 18, 2018

I read a discussion that had a link that gave possible testing to have done to determine what might be the cause of Small Fiber Neuropathy. I know it was a link inside a discussion and in the last 8 weeks as I am new to the group. Looking for guidance for my primary physician as My Neurologist says you have it and it doesn’t matter why. Can anyone help? Thanks

Hello @lakemom394, Welcome to Connect. Is this the link you saw in another discussion?

Cleveland Clinic – Skin Biopsy for Small Fiber Sensory Neuropathy
https://my.clevelandclinic.org/health/diagnostics/17479-skin-biopsy-for-small-fiber-sensory-neuropathy

It was in a post I made in the Living with Neuropathy – Welcome to the Group discussion. Here is the post with the link in it:
https://connect.mayoclinic.org/comment/118407/bookmark/?ajax_hook=action&_wpnonce=0fbf494185

@lakemom394 is your primary physician questioning your neurologist? I would think they would want to talk and compare notes.

John

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I am new but at the Cleveland Clinic They did the Tilt Table Test and found the small fiber neuropathy. I have multiple neuropathy's and overlapping diseases that they keep saying they need to find the underlying cause?? Lori

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Hi @loricarey, welcome to Connect. I have idiopathic small fiber peripheral neuropathy and the cause of mine is most likely hereditary but who knows. I only have numbness with my neuropathy so do not need any medications for the pain and there is not a whole lot that can help with the numbness.

Are you able to share what types of neuropathy that were diagnosed and if you have pain associated with the neuropathy?

John

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I have Small Fiber Neuropathy and have horrible burning pain in my feet, and now it’s traveling up to my calves. Does Mayo Clinic have treatments for my type of pain? It’s a progressive disease & I’m scared to death!

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@lexilulu

I have Small Fiber Neuropathy and have horrible burning pain in my feet, and now it’s traveling up to my calves. Does Mayo Clinic have treatments for my type of pain? It’s a progressive disease & I’m scared to death!

Jump to this post

Hello @lexilulu, Welcome to Connect, an online community where patients and caregivers share their experiences, find support and exchange information with others. I'm really sorry to hear you have burning pain in your feet with your neuropathy and now it's starting to go up into your calves. I only have numbness with mine. There is another discussion which you may want to read through the member posts to see what they have shared helps them and a few other discussions that also might be helpful.

— Burning feet and legs: https://connect.mayoclinic.org/discussion/burning-feet-and-legs/
— Member Neuropathy Journey Stories: What's Yours?: https://connect.mayoclinic.org/discussion/member-neuoropathy-journey-stories-whats-yours/
— Supplement recommendations: What can help neuropathy?: https://connect.mayoclinic.org/discussion/supplement-recommendations-can-help/

This may answer your question on Mayo Clinic treatments for neuropathic pain in the treatments section – Peripheral neuropathy – Diagnosis and treatment – Mayo Clinic: https://www.mayoclinic.org/diseases-conditions/peripheral-neuropathy/diagnosis-treatment/drc-20352067

Can you share a little more about how your neuropathy was diagnosed and how long you have had it?

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@johnbishop

Hello @lexilulu, Welcome to Connect, an online community where patients and caregivers share their experiences, find support and exchange information with others. I'm really sorry to hear you have burning pain in your feet with your neuropathy and now it's starting to go up into your calves. I only have numbness with mine. There is another discussion which you may want to read through the member posts to see what they have shared helps them and a few other discussions that also might be helpful.

— Burning feet and legs: https://connect.mayoclinic.org/discussion/burning-feet-and-legs/
— Member Neuropathy Journey Stories: What's Yours?: https://connect.mayoclinic.org/discussion/member-neuoropathy-journey-stories-whats-yours/
— Supplement recommendations: What can help neuropathy?: https://connect.mayoclinic.org/discussion/supplement-recommendations-can-help/

This may answer your question on Mayo Clinic treatments for neuropathic pain in the treatments section – Peripheral neuropathy – Diagnosis and treatment – Mayo Clinic: https://www.mayoclinic.org/diseases-conditions/peripheral-neuropathy/diagnosis-treatment/drc-20352067

Can you share a little more about how your neuropathy was diagnosed and how long you have had it?

Jump to this post

The supplement recommendations discussion is great, John, thanks!

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@johnbishop

Hello @lexilulu, Welcome to Connect, an online community where patients and caregivers share their experiences, find support and exchange information with others. I'm really sorry to hear you have burning pain in your feet with your neuropathy and now it's starting to go up into your calves. I only have numbness with mine. There is another discussion which you may want to read through the member posts to see what they have shared helps them and a few other discussions that also might be helpful.

— Burning feet and legs: https://connect.mayoclinic.org/discussion/burning-feet-and-legs/
— Member Neuropathy Journey Stories: What's Yours?: https://connect.mayoclinic.org/discussion/member-neuoropathy-journey-stories-whats-yours/
— Supplement recommendations: What can help neuropathy?: https://connect.mayoclinic.org/discussion/supplement-recommendations-can-help/

This may answer your question on Mayo Clinic treatments for neuropathic pain in the treatments section – Peripheral neuropathy – Diagnosis and treatment – Mayo Clinic: https://www.mayoclinic.org/diseases-conditions/peripheral-neuropathy/diagnosis-treatment/drc-20352067

Can you share a little more about how your neuropathy was diagnosed and how long you have had it?

Jump to this post

Have had it about 2 years now. It took forever to get a diagnosis. My physician sent me to Spine Clinic. I had 3 different tests & passed all of them. So they sent me to a Podiatrist. He said it was in S1, the sensory core in my spine. I have problems L4 & L5 as well. He sent me to the Pain Clinic. They gave me an epidural that helped my back, but not my feet. After this I got referral for a Neurologist. They did a circulation test that turned out fine. With the paperwork I filled out, he said I had SFN. I was already on Gabapentin, max dose (4-3x a day). He took me down to 3-3x a day & added a anti-seizure medication, couldn’t tolerate pain in stomach. He prescribed a different anti-seizure medication… same problem. Then he prescribed another type of medication that caused me to be a total zombie, weighted down & couldn’t function… stopped that & he prescribed same type of drug but different one, same thing happened. There was nothing else he could do. I decided to get a 2nd opinion & went to another Neurologist & he was of no help either. They just want to push drugs. I went back to Pain Clinic, as the dr there told me if I didn’t get answers he could help as a last resort… a Spinal Implant. I put in for a pre-authorization to insurance, but in reading about this I was too scared to have it done & decided against it. Went to a Chiropractor who was Certified in Peripheral Neuropathy. I went with his program, very pricey, but it helps a lot. I have a Re-Builder, where I put my feet in water w/ electrodes that restore your nerve fibers; an Infrared velcro sock & calve that helps w/ circulation; and a massager for circulation. The only thing I can do is the Re-Builder, which is the most important. It really calms my feet down. Thirty minutes in morning & in evening. I also do the Infrared Velcro Calve strap 30 min on ea side. I am unable to tolerate the infrared foot pad & the massager, as it burns my feet & flares it up worse!!!!! I’ve had significant improvement, but am still suffering badly. It’s very life altering. I will put my feet on large frozen flax pillows when I need them while sitting & have to have them to put feet on when I go to bed. I can’t elevate my feet w/o flaring them up burning. I am pre-diabetic & take Metformin for approx. a year. This has been SO mentally hard!!!!! I’m very scared as SFN is a progressive disease, not curable & is fatal. Yet I’ve asked what I can expect & Neurologists will not answer my question because they say everyone is different. I can’t imagine burning pain in my body & arms as well. I’ve read so much on line & get no where! Help, anybody!!!!! I don’t drink, have always exercised & watched my diet my entire life, don’t smoke & am 64 yrs old. WTH did I do to get this?????

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@lexilulu Your fear is understandable. Many people in these discussions offer wonderful suggestions that are helpful in dealing with this disease. Everything from diet to supplements and topical creams as well as meditation. This disease is not your fault. I hope you continue to find ways to manage the pain. As one supportive member said to me "“…finding methods and strategies that offer people a way to succeed. I would rather accentuate the positive and acknowledge the negative in order to problem solve….Surround yourself with nourishing people…take advantage of the "good" moments "

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