Unknown Cause or Idiopathic SFN

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/

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.

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

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!

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

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

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?

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 .

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

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