1. < Neuropathy

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

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pmogen | @pmogen | Oct 17, 2020

IVIG is supposed to help small fiber neuropathy but does anyone know, does IVIG work on small fiber neuropathy if Immunoglobulin levels are normal?

REPLY
1 reply
pmogen | @pmogen | Oct 17, 2020
In reply to @jimhd "@strikeanerve Gabapentin/neurontin didn't help me, and my wife says that it affected my thinking. I have..." + (show)
@jimhd

@strikeanerve

Gabapentin/neurontin didn't help me, and my wife says that it affected my thinking. I have 5 siblings, and Gabapentin worked for all of them.

By this point in my pn journey, I am willing to try any medication my doctors prescribe. I've had idiopathic sfpn and autonomic polyneuropathy since 2012, and I've tried a lot of medications. Some just did nothing, some didn't have any effect on my neuropathy, and had unacceptable side effects. Some reduced my pain for up to six months, then stopped working, and had no side effects. I have a team of great doctors whom I trust to give me any appropriate treatment, whether it's medication, or stimulator or surgery. After working with them for up to 15 years, I know that they have my best interest in mind.

I wish that one of the medications I've tried would treat the non-stop pain. Neuropathy is one of the diseases that has no cure, but there are many things that treat symptoms. I wish you the best in finding a treatment that works for you, and that you're comfortable with.

Jim

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You might look into Medical Rebuilder. I've had this device since being diagnosed 5 years ago and use it regularly. I think it has helped weakness and pain. I've also visited with others who have been helped. It's not magic, of course, and somewhat expensive - about $800 and not covered by insurance.

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ruthofanne | @ruthofanne | Oct 17, 2020
In reply to @pmogen "IVIG is supposed to help small fiber neuropathy but does anyone know, does IVIG work on..." + (show)
@pmogen

IVIG is supposed to help small fiber neuropathy but does anyone know, does IVIG work on small fiber neuropathy if Immunoglobulin levels are normal?

Jump to this post

I have the same question, but my neurologist dismissed it saying insurance will not pay for it. I have an appointment with another neurologist at Stanford but not until December, In the meantime still pursuing this question with research but read somewhere if a genetic connection can be made you have a chance of getting it approved.

REPLY
2 replies
jeffrapp | @jeffrapp | Oct 17, 2020
In reply to @ruthofanne "I have the same question, but my neurologist dismissed it saying insurance will not pay for..." + (show)
@ruthofanne

I have the same question, but my neurologist dismissed it saying insurance will not pay for it. I have an appointment with another neurologist at Stanford but not until December, In the meantime still pursuing this question with research but read somewhere if a genetic connection can be made you have a chance of getting it approved.

Jump to this post

Hi @ruthofanne and @pmogen
IVIG is used for specific types of peripheral neuropathy, primarily chronic inflammatory demyelinating polyneuropathy (CIDP), which is a very rare condition.
CIDP causes more than just sensory problems (like pain). It also causes progressive weakness, lack of coordination, etc..
IVIG treatment is very expensive, and most insurance won't pay for it, unless you have the proper diagnosis.
There are also adverse reactions, as with any medicine.
Perhaps that is what your neurologist was trying to tell you.
Good luck!
Jeff

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Catcando | @catharbert | Oct 23, 2020
In reply to @jimhd "@strikeanerve Gabapentin/neurontin didn't help me, and my wife says that it affected my thinking. I have..." + (show)
@jimhd

@strikeanerve

Gabapentin/neurontin didn't help me, and my wife says that it affected my thinking. I have 5 siblings, and Gabapentin worked for all of them.

By this point in my pn journey, I am willing to try any medication my doctors prescribe. I've had idiopathic sfpn and autonomic polyneuropathy since 2012, and I've tried a lot of medications. Some just did nothing, some didn't have any effect on my neuropathy, and had unacceptable side effects. Some reduced my pain for up to six months, then stopped working, and had no side effects. I have a team of great doctors whom I trust to give me any appropriate treatment, whether it's medication, or stimulator or surgery. After working with them for up to 15 years, I know that they have my best interest in mind.

I wish that one of the medications I've tried would treat the non-stop pain. Neuropathy is one of the diseases that has no cure, but there are many things that treat symptoms. I wish you the best in finding a treatment that works for you, and that you're comfortable with.

Jim

Jump to this post

I have not tried it but I have read that low dose naltrexone has worked for many people. If you haven't yet tried it, ask your doctor. Good luck.

REPLY
1 reply
pieface1971 | @pieface1971 | Oct 24, 2020
In reply to @catharbert "I have not tried it but I have read that low dose naltrexone has worked for..." + (show)
@catharbert

I have not tried it but I have read that low dose naltrexone has worked for many people. If you haven't yet tried it, ask your doctor. Good luck.

Jump to this post

I have painful small fiber neuropathy in both feet. It came on me after a nine day hospital stay with critical low sodium. I also have fibromyalgia, arthritis, chronic stage 3 renal failure si cannot take anti inflammatory drugs.
I researched Lo dose Naltrexone. My arthritis doctor prescribed for me at my request. It was an amazing drug for me THAT WORKED!!!!
Helped so so so much however I did not tolerate it because for me it caused my blood pressure to elevate!!! By raising my blood pressure it gave me a horrible headache. I had to stop it. I was very disappointed. But the benefits it gave me DID NOT out weigh the risk of causing a stroke.

REPLY
1 reply
pieface1971 | @pieface1971 | Oct 24, 2020
In reply to @pieface1971 "I have painful small fiber neuropathy in both feet. It came on me after a nine..." + (show)
@pieface1971

I have painful small fiber neuropathy in both feet. It came on me after a nine day hospital stay with critical low sodium. I also have fibromyalgia, arthritis, chronic stage 3 renal failure si cannot take anti inflammatory drugs.
I researched Lo dose Naltrexone. My arthritis doctor prescribed for me at my request. It was an amazing drug for me THAT WORKED!!!!
Helped so so so much however I did not tolerate it because for me it caused my blood pressure to elevate!!! By raising my blood pressure it gave me a horrible headache. I had to stop it. I was very disappointed. But the benefits it gave me DID NOT out weigh the risk of causing a stroke.

Jump to this post

Lo dose naltrexone caused my blood pressure to elevate so was unable to take it. Lo dose worked AMAZING for my symptoms.

REPLY
janstar61 | @janstar61 | Jun 21, 2021

My doctor said it may only work for a certain type of neuropathy that is very rare. Not mine. The only thing that has worked for my constant burning pain is a combo of pregabalin and an opioid patch. I have tried everything many things but most I was unable to tolerate.

REPLY
jfouts1979 | @jfouts1979 | Jul 14, 2021
In reply to @ruthofanne "I have the same question, but my neurologist dismissed it saying insurance will not pay for..." + (show)
@ruthofanne

I have the same question, but my neurologist dismissed it saying insurance will not pay for it. I have an appointment with another neurologist at Stanford but not until December, In the meantime still pursuing this question with research but read somewhere if a genetic connection can be made you have a chance of getting it approved.

Jump to this post

After 3 years of denials, I was able to try 2 rounds of infusions - IVIG did begin to help me - then insurance denied it stating I showed no improvement (without me having a doctor appointment and without talking to me) - I am pretty sure that is grounds for a bad faith claim - on the part of the insurance company not acting in good faith - but that is a separate issue - yes - the IVIG did begin to help. Interestingly, I also have No to very low IgM.

REPLY
3 replies
Mentor
John, Volunteer Mentor | @johnbishop | Jul 14, 2021
In reply to @jfouts1979 "After 3 years of denials, I was able to try 2 rounds of infusions - IVIG..." + (show)
@jfouts1979

After 3 years of denials, I was able to try 2 rounds of infusions - IVIG did begin to help me - then insurance denied it stating I showed no improvement (without me having a doctor appointment and without talking to me) - I am pretty sure that is grounds for a bad faith claim - on the part of the insurance company not acting in good faith - but that is a separate issue - yes - the IVIG did begin to help. Interestingly, I also have No to very low IgM.

Jump to this post

Hello @jfouts1979, Welcome to Connect. You do have a right to appeal health insurance claim denials - https://www.healthcare.gov/appeal-insurance-company-decision/appeals/ It's good to hear the IVIG did provide some relief for you.

Are you able to share a little more about your diagnosis and your symptoms?

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