Unknown Cause or Idiopathic SFN

Posted by katec @katec, Nov 5, 2019

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!

@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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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?

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@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 .

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@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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@artscaping

@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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Thanks for the info, but I sleep well at night. I am very blessed there. My pain is during the day and very bad when on my feet. I also experience times of cold feet and maybe later the same day burning feet. It seems my feet can not tolerate pressure of standing or tight socks or shoes. I have tried several meds with no good results, but going back now and trying Gabapentin again, increasing the dosage. I have also tried CBD from a local supplier without any improvement in the pain. However, I have not tried or don't know Where to get Decarb CBD. My family Dr has been helpful in trying different meds and I have seen 2 Neurologists and they seem to know nothing about neuropathy. Can you share more about how to get Decarb CBD? Thanks for your interest in helping those of us that don’t know where to go next.

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@chace61

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

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Please, what brand of CBD with pain reliever cream do you find effective? I have the same PN symptoms but have found only small help so far with the CBD creams I have tried. Thanks, Terry

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@katec I don't remember if I told you that after trying all but a few at the very bottom of the list, we hit on imipramine. I did experience some side effects as I slowly increased the dosage to where I am at 100mg, but my thinking is clear again. Sometimes I think that we don't give new meds enough time – both for the body to adjust to them so side effects subside, or for the medication to have time to begin reducing the pain. Sometimes I think that I should go back and retry some of those meds and give them that extra time, though not back to the ones that had really serious side effects, like the one that put me in the hospital. For now, though, I'll stick with Imipramine for as long as it does its job.

Your son is on our daily prayer lists.

Jim

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@jimhd

@katec I don't remember if I told you that after trying all but a few at the very bottom of the list, we hit on imipramine. I did experience some side effects as I slowly increased the dosage to where I am at 100mg, but my thinking is clear again. Sometimes I think that we don't give new meds enough time – both for the body to adjust to them so side effects subside, or for the medication to have time to begin reducing the pain. Sometimes I think that I should go back and retry some of those meds and give them that extra time, though not back to the ones that had really serious side effects, like the one that put me in the hospital. For now, though, I'll stick with Imipramine for as long as it does its job.

Your son is on our daily prayer lists.

Jim

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@jimhd Thank you for the suggestion! I will mention that one as it isn’t one he’s tried before. I agree with you about going back to try meds. He was really young when we first started trying different meds and I think doctors were unsure about dosage, but now that he’s an adult weight I’d like to revisit some of those meds to see if they’ll bring him any relief! Thanks again!!

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@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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@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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@rwinney

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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@rwinney @azza1 i also read dr oaklanders w papers. my dr told that ivig has a lot side effects and is only given if sfn is very bad. i wish i could speak to dr oaklander,

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@artscaping

@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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@artscaping my dr today mentioned cbd and medical marijuana. i'd lovve to know more about your experiences with it

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@jimhd

@katec I don't remember if I told you that after trying all but a few at the very bottom of the list, we hit on imipramine. I did experience some side effects as I slowly increased the dosage to where I am at 100mg, but my thinking is clear again. Sometimes I think that we don't give new meds enough time – both for the body to adjust to them so side effects subside, or for the medication to have time to begin reducing the pain. Sometimes I think that I should go back and retry some of those meds and give them that extra time, though not back to the ones that had really serious side effects, like the one that put me in the hospital. For now, though, I'll stick with Imipramine for as long as it does its job.

Your son is on our daily prayer lists.

Jim

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@jimhd imipramine is a great medicine.i've been on it for many years. unfortunately for me its not enough anymore. scared to take neurontin or lyrica but may not have choice.

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@albiet

@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 ,
i am on Lyrica brand name.
Decarb High CBD is
https://www.cbdschool.com/what-is-decarboxylated-cbd/

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