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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Mentor
Rachel, Volunteer Mentor | @rwinney | Nov 17, 2019
In reply to @artscaping "@rwinney, those are helpful. I would be very hesitant about extra strength dosages. I don’t think..." + (show)
@artscaping

@rwinney, those are helpful. I would be very hesitant about extra strength dosages. I don’t think the pain from SFN requires those levels. The times seem pretty accurate. Oral mucosal is my preferred distribution method. Find joy today. Chris

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Thank you Chris. I agree. Not a big gunner anyway and will remain by cautious self. Wishing you a peaceful day.

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albiet | @albiet | Nov 17, 2019

@artscaping @jimhd @johnbishop I noticed in one of the posts meantime a supplement called cytoquel. Ha anyone here tried it?

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1 reply
Mentor
Jim, Volunteer Mentor | @jimhd | Nov 17, 2019
In reply to @albiet "@artscaping @jimhd @johnbishop I noticed in one of the posts meantime a supplement called cytoquel. Ha..." + (show)
@albiet

@artscaping @jimhd @johnbishop I noticed in one of the posts meantime a supplement called cytoquel. Ha anyone here tried it?

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@albiet

I looked at the article. It says that it's an anti-inflammatory. I can't take NSAIDs, but maybe this is different. I have an appointment coming up with the doctor and I'm going to ask him about it.

Jim

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2 replies
Mentor
Jim, Volunteer Mentor | @jimhd | Nov 17, 2019
In reply to @rwinney "Found this on the dispensaries website and I find both very helpful in general as an..." + (show)
@rwinney

Found this on the dispensaries website and I find both very helpful in general as an overview and comparison. A little tough to read, sorry.

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@rwinney Not cheap, is it.

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1 reply
cncwi17 | @cncwi17 | Nov 17, 2019

This is Carol Selius. I had a high B 12, actually it's low B12 which I don't understand. Go to a naturopathic doctor. I was diagnosed with candida. I also have leaky gut syndrome. Have that doctor test you for leaky gut and candida. There's a test called OAT. It tests for 75 different things from fungus/candida to microcondria, etc... It's pricey, but worth it. Take high doses of B12/Folate and the the B's, etc... I took a food intolerance test from a different doctor. Food intolerances will have an effect on your nerves. It does mine. Eat high protein, low carb foods. Cut out the sugar, even the good sugars, except for organic stevia. Methylation, talk to your naturopathic doctor MTHFR (Methylation) is a big factor with periphial neuropathy. Eat very little fruit. High fruit sugar are bananas, mangoes, pineapples, etc.. I hope this helps.

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2 replies
cncwi17 | @cncwi17 | Nov 17, 2019

What is hymozygous to MTHFR mean?

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1 reply
iceblue | @iceblue | Nov 17, 2019
In reply to @cncwi17 "This is Carol Selius. I had a high B 12, actually it's low B12 which I..." + (show)
@cncwi17

This is Carol Selius. I had a high B 12, actually it's low B12 which I don't understand. Go to a naturopathic doctor. I was diagnosed with candida. I also have leaky gut syndrome. Have that doctor test you for leaky gut and candida. There's a test called OAT. It tests for 75 different things from fungus/candida to microcondria, etc... It's pricey, but worth it. Take high doses of B12/Folate and the the B's, etc... I took a food intolerance test from a different doctor. Food intolerances will have an effect on your nerves. It does mine. Eat high protein, low carb foods. Cut out the sugar, even the good sugars, except for organic stevia. Methylation, talk to your naturopathic doctor MTHFR (Methylation) is a big factor with periphial neuropathy. Eat very little fruit. High fruit sugar are bananas, mangoes, pineapples, etc.. I hope this helps.

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I doubt there is a person alive who has been to a Naturopath and has not been diagnosed with Candida 😉

I am interested in your high B12 though. What did your doctor say about that?

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1 reply
Mentor
Rachel, Volunteer Mentor | @rwinney | Nov 17, 2019
In reply to @jimhd "@rwinney Not cheap, is it." + (show)
@jimhd

@rwinney Not cheap, is it.

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No sir! That's what has kept me on $4 per month hydrocodone. But, that does not serve my brain or body well long term. A bit unfair, isn't it? Hoping time will change this misfortune.

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klro0001 | @klro0001 | Nov 17, 2019
In reply to @rwinney "Hello...I'm feeling good about my recent choice to stop lidocaine infusions. I have been approved for..." + (show)
@rwinney

Hello...I'm feeling good about my recent choice to stop lidocaine infusions. I have been approved for Medical marijuana and will be visiting a dispensery tomorrow. Hoping it provides the masking of pain and discomfort I need and will allow for discontinuation of hydrocodone...2 years coming. Thank you Chris for your positive encouragement since I've joined connect. You and many others have been a big help in my discoveries of how to live better with SFN. Fingers are crossed for a better tomorrow.
Rachel

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@rwinney

My fingers are crossed for you as well. 🤞🏾Praying that medical cannibus provides the relief you need.

Kia

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1 reply
klro0001 | @klro0001 | Nov 17, 2019
In reply to @jimhd "@albiet I looked at the article. It says that it's an anti-inflammatory. I can't take NSAIDs,..." + (show)
@jimhd

@albiet

I looked at the article. It says that it's an anti-inflammatory. I can't take NSAIDs, but maybe this is different. I have an appointment coming up with the doctor and I'm going to ask him about it.

Jim

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@jimhd

Please let us know your doctor’s thoughts/suggestions about this supplement.

Kia

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