1. < Neuropathy

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!

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albiet | @albiet | Nov 12, 2019
In reply to @rwinney "Hi everyone. It's very interesting, the theory on IVIG. I researched it's importance for auto immune..." + (show)
@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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1 reply
albiet | @albiet | Nov 12, 2019
In reply to @artscaping "@cmartinjr, You may need to adjust the gabapentin to get a better dose at night for..." + (show)
@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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3 replies
albiet | @albiet | Nov 12, 2019
In reply to @jimhd "@katec I don't remember if I told you that after trying all but a few at..." + (show)
@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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1 reply
azza1 | @azza1 | Nov 12, 2019
In reply to @albiet "@azza1 can i ask you what decarb high cbd is? is that a brand od cbd?...." + (show)
@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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2 replies
albiet | @albiet | Nov 12, 2019
In reply to @azza1 "Hi everyone , i am on Lyrica brand name. Decarb High CBD is https://www.cbdschool.com/what-is-decarboxylated-cbd/" + (show)
@azza1

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

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@azza1 thanks for the quick response. Can I ask which brand of de carb high cbd you use?
Is it true there are difference between the brand lyrica and the generic.

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azza1 | @azza1 | Nov 12, 2019
In reply to @albiet "@artscaping my dr today mentioned cbd and medical marijuana. i'd lovve to know more about your..." + (show)
@albiet

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

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Hi Albiet
from my experience , the only thing make reduce for pain with me is the High CBD .i am taking it from 2 years but in the beginning i wastaking as a ora in a shape of oil under the tongue but after a while it caused a stomach upset for me and the pain clinic change the prescription to Decarb High CBD
please , read this link to know well what is that .
https://www.cbdschool.com/what-is-decarboxylated-cbd/
Thank you

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2 replies
Mentor
Jim, Volunteer Mentor | @jimhd | Nov 12, 2019
In reply to @albiet "@jimhd imipramine is a great medicine.i've been on it for many years. unfortunately for me its..." + (show)
@albiet

@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

I'm hoping Imipramine does the job for a long time, but, being a kind of cynical person, I know that nothing lasts forever. I'll just take it until I have to see the pain specialist. I take Mirtazapine for depression. I don't remember what it's usually prescribed for.

Jim

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albiet | @albiet | Nov 12, 2019

@jimhd I started taking imipramine 30 years ago after 1 year of massive pain broke me down. I believe it saved my life. It took another 20 years before I found out I had SFN. I get depresses when the pains come on. I had a 9 year break but the last year has been bad again. It confusing is as you get older it’s hard to find out if something other than SFN is causing the problems. The only reason I’m stopping the mirtzapine is because of the tinnitus. I was hoping it would help more with sleep but I guess I was on too little. How much imipramine and mirtzapine are you on. I interested in knowing how high the 2 of the drugs can be taken together

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1 reply
Mentor
Rachel, Volunteer Mentor | @rwinney | Nov 12, 2019
In reply to @albiet "@rwinney @azza1 i also read dr oaklanders w papers. my dr told that ivig has a..." + (show)
@albiet

@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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Me too!

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Mentor
Rachel, Volunteer Mentor | @rwinney | Nov 12, 2019
In reply to @azza1 "Hi Albiet from my experience , the only thing make reduce for pain with me is..." + (show)
@azza1

Hi Albiet
from my experience , the only thing make reduce for pain with me is the High CBD .i am taking it from 2 years but in the beginning i wastaking as a ora in a shape of oil under the tongue but after a while it caused a stomach upset for me and the pain clinic change the prescription to Decarb High CBD
please , read this link to know well what is that .
https://www.cbdschool.com/what-is-decarboxylated-cbd/
Thank you

Jump to this post

Hello. What form do you take it in? Oil still since you changed prescription?

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