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Unknown Cause or Idiopathic SFN
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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Thank you Chris. I agree. Not a big gunner anyway and will remain by cautious self. Wishing you a peaceful day.
@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 Reaction@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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1 Reaction@rwinney Not cheap, is it.
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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1 ReactionWhat is hymozygous to MTHFR mean?
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?
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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1 Reaction@rwinney
My fingers are crossed for you as well. 🤞🏾Praying that medical cannibus provides the relief you need.
Kia
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1 Reaction@jimhd
Please let us know your doctor’s thoughts/suggestions about this supplement.
Kia
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