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Unknown Cause or Idiopathic SFN
Neuropathy | Last Active: Jan 7, 2020 | Replies (120)Comment receiving replies
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
Replies to "I know well what he is feeling because it is exactly my symptoms , burning on..."
My diagnosis and symptoms are very similar and 600mg of gabapentin 3X daily is not helping. Are you experiences reduced pain now?
@azza1 can i ask you what decarb high cbd is? is that a brand od cbd?. also, i was curious if you take lyrica brand or the generic. since you are a pharmacist, i was wondering if there is a big difference in the brand vs generic. 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