Unknown Cause or Idiopathic SFN

Posted by katec @katec, 5 days ago

Hello. I was wondering if there were any folks out there who were at one point labeled “idiopathic” or “unknown cause” SFN, BUT later found the cause?

I’m asking because my son (15 years old) has a positive biopsy for SFN. We have done every blood test imaginable and thorough genetic testing to try and pinpoint what is causing his SFN so we can guide treatment. So far, nothing shows up out of the ordinary on any test. His B12 is high, which is weird since he is homozygous for MTHFR, but other than that everything comes back normal on blood tests and his genetic testing shows no known mutations.

His doctors have tried many medications and he doesn’t respond to those in either a negative or positive way. The doctors are pretty stumped, so I was wondering if anyone else has had a similar situation and finally did find something (maybe outside the box of normal testing) that they think is causing the SFN and were better able to treat it? Ideally we’d like it to be autoimmune, so we could start IVIG or another type of immunotherapy (even though he didn’t respond to a 30 day high dose of prednisone) but nothing in his bloodwork is pointing in that direction.

Thanks so much!

Hello @katec, I have idiopathic small fiber PN diagnosed by a Mayo neurologist and think mine maybe heriditary but without extensive testing on others in the family I don't think there is anyway for me to know. I hope you can find the cause and something that helps your son. Hoping other members who have been diagnosed with idiopathic SFN will be able to offer some suggestions. It's good to see that you are learning as much as you can about his condition. I think that the more knowledge you have the better questions you can ask the doctors and hopefully have a better treatment for your son.

The National Institute of Health has a fact sheet that lists a lot of causes along with other information that you might find helpful if you have not already seen it.
https://www.ninds.nih.gov/Disorders/Patient-Caregiver-Education/Fact-Sheets/Peripheral-Neuropathy-Fact-Sheet#183563208

Also the Neuropathy Commons website is one of the better resources for information – https://neuropathycommons.org/

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@johnbishop

Hello @katec, I have idiopathic small fiber PN diagnosed by a Mayo neurologist and think mine maybe heriditary but without extensive testing on others in the family I don't think there is anyway for me to know. I hope you can find the cause and something that helps your son. Hoping other members who have been diagnosed with idiopathic SFN will be able to offer some suggestions. It's good to see that you are learning as much as you can about his condition. I think that the more knowledge you have the better questions you can ask the doctors and hopefully have a better treatment for your son.

The National Institute of Health has a fact sheet that lists a lot of causes along with other information that you might find helpful if you have not already seen it.
https://www.ninds.nih.gov/Disorders/Patient-Caregiver-Education/Fact-Sheets/Peripheral-Neuropathy-Fact-Sheet#183563208

Also the Neuropathy Commons website is one of the better resources for information – https://neuropathycommons.org/

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Thanks so much, John! You are absolutely right, I’m hoping the more I can educate myself about this condition the more productive doctor’s appointments will be for my son.

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Hi @katec,
I am in the same situation like your son but I want to know what is the symptoms he has it right now . I did diagnose idiopathic SFP from 4 years. I can share you with my experience if you like . One doctor try to give me this offer ( IVIG ) while I was in Egpt . He told me , I cannot feel any progress until I get a third injection, and that is mean you have to wait for 3 months to see if there is any results.
I hope , the injection will help your son .
Thank you

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@azza1

Hi @katec,
I am in the same situation like your son but I want to know what is the symptoms he has it right now . I did diagnose idiopathic SFP from 4 years. I can share you with my experience if you like . One doctor try to give me this offer ( IVIG ) while I was in Egpt . He told me , I cannot feel any progress until I get a third injection, and that is mean you have to wait for 3 months to see if there is any results.
I hope , the injection will help your son .
Thank you

Jump to this post

So far his only symptom, that we are aware of, is severe pain on the bottoms of his feet. It never goes away and is worse when weight bearing. Even just standing for a few minutes is brutally painful for him. We’ve done lots of testing make we can’t find anything quirky in his bloodwork that points to autoimmune to warrant the IVIG treatments. The docs are working on what’s next in his treatment, so that’s why I was wondering if anyone else has had a similar experience and finally did find something that lead them to the cause of the SFN. Thanks!

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I know well what he is feeling because it is exactly my symptoms , burning on the bottom of my feet and wake me up from the middle of my sleeping.
I can’t standing or sitting while my feet touching the floor for few minutes. Sometimes I feel freezing bite on the top of my feet even I cover my feet at my home . The docs did a lot of blood work for me and they didn’t find any reason cause
SF Polyneuropathy . If it is happening in more than one part in your body , it is called Small Fiber Polyneuropathy . I have it in my right hand and both feet .
I am pharmacist by the way and I did a lot of research since I get SFP.
I don’t want to scare you , I tried many kind of medication until I find the solution.
I am taking Decarb High CBD cap Twice
a day morning and afternoon.
Cymbalta 60 in the morning .

At night
2 cap Lyrica 75 mg + 2 cap Nabilone 0.5 mg .
One doctor recommended the IVIG injection even I don’t have any problems in my immune or-autoimmune but I get second opinion from another doctor and he refused this injection for the SFN.
I wish I can help your son . Please , don’t hesitate to ask me any questions .
Thank you

REPLY
@azza1

I know well what he is feeling because it is exactly my symptoms , burning on the bottom of my feet and wake me up from the middle of my sleeping.
I can’t standing or sitting while my feet touching the floor for few minutes. Sometimes I feel freezing bite on the top of my feet even I cover my feet at my home . The docs did a lot of blood work for me and they didn’t find any reason cause
SF Polyneuropathy . If it is happening in more than one part in your body , it is called Small Fiber Polyneuropathy . I have it in my right hand and both feet .
I am pharmacist by the way and I did a lot of research since I get SFP.
I don’t want to scare you , I tried many kind of medication until I find the solution.
I am taking Decarb High CBD cap Twice
a day morning and afternoon.
Cymbalta 60 in the morning .

At night
2 cap Lyrica 75 mg + 2 cap Nabilone 0.5 mg .
One doctor recommended the IVIG injection even I don’t have any problems in my immune or-autoimmune but I get second opinion from another doctor and he refused this injection for the SFN.
I wish I can help your son . Please , don’t hesitate to ask me any questions .
Thank you

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Hi everyone. It's very interesting, the theory on IVIG. I researched it's importance for auto immune diseases therefore, believing if an auto immune wasn't the underlying cause of SFPN, it was a warranted treatment. My cause is B12 deficiency yet my Neurologist recommended IVIG. Only problem is Medicare will not cover…$5-10k per treatment. So, I started with cheapest covered treatment…which is lidocaine infusion (5 months and hit max dose Monday). Next option, should I choose, is Plasmapherisis. Back to IVIG…Dr. Oaklander breaks it down in her presentation on SFN. Her belief and basis to this disease is autoimmune. At least that's what I took from it. I now understand why IVIG is an option for all regardless of underlying cause. Especially when someone is "idiopathic". Bottom line, in my opinion, Drs are scrambling to help as we are scrambling for help and understanding of this disease.
Hope everyone is on the upside today! 🤗
Rachel

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Thank you so much for sharing what you’re taking to help with your pain. I’ve never heard of Decarb CBD. We’ve tried CBD in the past but I haven’t heard of Decarb, do you think it works better or differently than regular CBD?

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@katec

Thank you so much for sharing what you’re taking to help with your pain. I’ve never heard of Decarb CBD. We’ve tried CBD in the past but I haven’t heard of Decarb, do you think it works better or differently than regular CBD?

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i have a registtation and I have a prescription from a pain clinic. They prescribed CBD oil ( oral under the toung ) in the beginning for me , it was good but after a while it cause a stomach upset , refkex and vomiting for me. I did explaied my situation to the pain clinic and they prescribe the Decarb high CBD ( itis powder and fill it in a capsule and take it as other medications . As my experience it is more effective more than other kind of CBD because it is high % of CBD .

REPLY
@azza1

I know well what he is feeling because it is exactly my symptoms , burning on the bottom of my feet and wake me up from the middle of my sleeping.
I can’t standing or sitting while my feet touching the floor for few minutes. Sometimes I feel freezing bite on the top of my feet even I cover my feet at my home . The docs did a lot of blood work for me and they didn’t find any reason cause
SF Polyneuropathy . If it is happening in more than one part in your body , it is called Small Fiber Polyneuropathy . I have it in my right hand and both feet .
I am pharmacist by the way and I did a lot of research since I get SFP.
I don’t want to scare you , I tried many kind of medication until I find the solution.
I am taking Decarb High CBD cap Twice
a day morning and afternoon.
Cymbalta 60 in the morning .

At night
2 cap Lyrica 75 mg + 2 cap Nabilone 0.5 mg .
One doctor recommended the IVIG injection even I don’t have any problems in my immune or-autoimmune but I get second opinion from another doctor and he refused this injection for the SFN.
I wish I can help your son . Please , don’t hesitate to ask me any questions .
Thank you

Jump to this post

My diagnosis and symptoms are very similar and 600mg of gabapentin 3X daily is not helping. Are you experiences reduced pain now?

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Try using CBD cream with pain reliever in the cream. It helps me where Gabapentin did not work.

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@katec

So far his only symptom, that we are aware of, is severe pain on the bottoms of his feet. It never goes away and is worse when weight bearing. Even just standing for a few minutes is brutally painful for him. We’ve done lots of testing make we can’t find anything quirky in his bloodwork that points to autoimmune to warrant the IVIG treatments. The docs are working on what’s next in his treatment, so that’s why I was wondering if anyone else has had a similar experience and finally did find something that lead them to the cause of the SFN. Thanks!

Jump to this post

I was diagnosed with SFN just a year ago. Burning sensation from my butt to my feet. Sometimes in my arms. I am on 3,000 mg of Gabapentin spread throughout the day. That’s a high dose but I tolerate it quite well. That has really helped tremendously. I have Fibromyalgia diagnosed 30 years ago so since that is an autoimmune issue I already had I think that’s what led to my diagnosis. BUT with all the bloodwork I have had, I’ve never had any indication of autoimmunity in my body so all diagnoses given have been based on symptoms alone.

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@cmartinjr

My diagnosis and symptoms are very similar and 600mg of gabapentin 3X daily is not helping. Are you experiences reduced pain now?

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If you tolerate the Gabapentin well consult your doctor to see if he/she will increase it. I am on 3000 mg a day now and that has helped tremendously.

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@cmartinjr

My diagnosis and symptoms are very similar and 600mg of gabapentin 3X daily is not helping. Are you experiences reduced pain now?

Jump to this post

Hi ,
if you have idiopathic Small Fiber Polyneuropathy and you have the same symptomes like me . My medication reduce the pain by 70 % . The docs tried alot of medications with me before we reach to this combinations . The main one of this list is the Decarb high CBD .

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@cmartinjr

My diagnosis and symptoms are very similar and 600mg of gabapentin 3X daily is not helping. Are you experiences reduced pain now?

Jump to this post

@cmartinjr, You may need to adjust the gabapentin to get a better dose at night for sleeping without the tingles, needles, and burning. I do not handle gabapentin well during the day and have found medical cannabis to control the pain quite well.

However, for nighttime medication, I take 1200 mg of gabapentin and a cannabis tincture. It works very well and even assures that when I wake up in the morning, the pain will be moderate.

Keep experimenting with dosages and medications that can help. Let me know if you want more information on medical cannabis. Be safe and protected tonight. Chris

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@azza1

i have a registtation and I have a prescription from a pain clinic. They prescribed CBD oil ( oral under the toung ) in the beginning for me , it was good but after a while it cause a stomach upset , refkex and vomiting for me. I did explaied my situation to the pain clinic and they prescribe the Decarb high CBD ( itis powder and fill it in a capsule and take it as other medications . As my experience it is more effective more than other kind of CBD because it is high % of CBD .

Jump to this post

@assa1, and @katec, Just a friendly reminder about using medical cannabis. Never on an empty tummy. And never with alcohol.I sometimes do my prunes first or cereal and fruit. I had my worst bouts with unwanted reactions twice. You would think I had learned to follow my own guidelines. Nope…just forgot. Be happy and at peace. Chris

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