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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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I haven't tried it. Maybe it's something I should look into.
@albiet, @johnbishop, @jimhd, @rwinney, Good evening group...I decided to add Rachel so everyone in our original group is included. @albiet, I haven't tried IVIG. What is it like? Who would be eligible to receive the treatment? Is my memory working when it tells me you may have tried this option, Rachel? Hope you all have a restful sleep. Chris
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1 ReactionNo sleeping here yet Chris. Close, I have spoke of it as an option mentioned to me by my Neurologist. A 5-10k option that Medicare does not cover and as I understand it, regular insurance makes it difficult to obtain coverage.
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1 Reaction@artscaping i have not tried ivig either. I’m hoping that someone on this site has tried it. I would love to know what it took for a dr to actually ask for that and if it helped.
Also has anyone taken steroids for SFN?
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1 ReactionMy son was put on 50 mg of Prednisone for 30 days to suppress his immune system and see if that helped with his pain. It did not help him at all, but supposedly some people are on maintenance steroids because it does help them. I think it supposed to be more helpful to those whose SFN is caused by autoimmune issues and not genetic.
We are currently trying to determine if IVIG would be a reasonable treatment for my son. Since we can’t point our finger at a specific autoimmune issue causing his SFN and he didn’t respond to the Prednisone, the doctors are hesitant to try it, but haven’t ruled it out yet. Insurance probably won’t cover it since we can’t pin it on a specific autoimmune disease, but that’s ok, he’s 15 years old and something needs to be done soon! I’ve gotten my way with insurance in the past, so I’m prepared to work my magic again;) Insurance hasn’t met this Mama Bear yet!
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3 Reactions@albeit, I just sent you some posts for IVIG. Let me know if you need more help.
YOU GO Mama bear!
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2 Reactions@artscaping i don’t see the posts. How do I find them
@albeit, oh dear, did you use the search tool for IVIG and Neuropathy. I just got to my MFR treatment. I will check back in a couple of hours. We’ll get it.
@albeit, There is a discussion about this topic....here. It contains the other posts. Let me know if you have other questions.
https://connect.mayoclinic.org/discussion/ivig-infusions/
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