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

@strikeanerve

I haven't taken gabapentin, after reading several reviews it does not seem effective for many people and the noted side effects are undesirable to me. I'm young, dx at 35 and considering I will have this for a lifetime, I'm weary of using it.

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@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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@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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Hi Jim, I just read about Belbuca, supposedly a new 12 hr. opioid? It is a thin square strip which you place in your cheek to dissolve. I don’t have any idea about it’s effectiveness. Helen

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This group is very helpful. May I ask how long did it take to get your skin biopsy back? I’ve been waiting 7 weeks, it was sent to Mayo

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@kyc117

I had an appointment with the neurologist 4 weeks after the biopsy, to discuss the results, so I'm pretty sure your doctor has your report by now. Have you called or texted them? Sometimes it takes some nudging (sometimes it takes a lot of nudging).

Jim

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That time frame seems excessive, I would call and make sure it's been processed. I had mine done at an outside clinic, it was read by two different specialist but I had results in less than 2 weeks.

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

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@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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@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?

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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.

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@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.

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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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@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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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.

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@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.

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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.

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@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.

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

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