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!

@cncwi17

What is hymozygous to MTHFR mean?

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@cncwi17 – this article may be useful on your question on MTHFR https://www.healthline.com/health/mthfr-gene

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@rwinney

Hi. I took time to read back through your history of posts and I have a better understanding now of your situation. You and I are very similar. I have Small Fiber Poly Neuropathy and was told from a B12 deficiency (219). My b12 levels are normal now, however no help to my nerves so I might as well be idiopathic….the damage has been done. Neurologist says maybe if lucky my nerves may regenerate 2-3 years. I think that is big farce. My symptoms continue to progress and parallel yours except my damage is neck and up back of head, across backs of shoulders, down arms and into hands (right side being worse), both full length of legs and feet (right foot and left calf being worse). Aching in legs, cramping in legs and arms, burning skin, vibrations, shocking pains, limited walking and many other things. It truly torments me. Thank you for sharing your story and success with CBD. I'm on Lyrica CR, Duloxetine and hydrocodone 5mg. Hydro has not been working well anymore so I'm applying for my medical marijuana card and will finally be making a change to cbd/thc. I also receive weekly lidocaine infusions which are limited in their relief as well and disappointing and inconsistent overall. Plasmapherisis would be next option and I'm told IVIG is off the table because Medicare won't cover it. Thanks for listening and again for the helpful information.
Together in perseverance! Be well.
Rachel

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Hi Rachel
I have a hemiplegic migrain from more tham 10 years and it causea sever pain and stiffness in my neck, shoulder and back head and i was taking topamax tab 100mg . Due to a side effect between it and Cannabis . The Neuro change the topamax to Botox injection on my head , neck and shoulder . The Botox helps me in the stIffness of them . That is make me thought this symptoms is related to the migrain not to the SFN . The other symptoms are my right hand and both legs from my toes up to my both knee cramping , burnnig and baker cyst in my right knee cause joint locking and pain . Now my left hand starts numbness and tingling.
I understand what we are taking are a pain killer or analgesic only but there is no cure for this disease . I am really sorry to say that .
Thank you

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@azza1

Hi Rachel
I have a hemiplegic migrain from more tham 10 years and it causea sever pain and stiffness in my neck, shoulder and back head and i was taking topamax tab 100mg . Due to a side effect between it and Cannabis . The Neuro change the topamax to Botox injection on my head , neck and shoulder . The Botox helps me in the stIffness of them . That is make me thought this symptoms is related to the migrain not to the SFN . The other symptoms are my right hand and both legs from my toes up to my both knee cramping , burnnig and baker cyst in my right knee cause joint locking and pain . Now my left hand starts numbness and tingling.
I understand what we are taking are a pain killer or analgesic only but there is no cure for this disease . I am really sorry to say that .
Thank you

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Hi @azza1
Thank you for your response. Im so glad to hear botox injections bring some relief to you. I receive botox in the same areas and I count down the days in my final month until next visit. Never thought I'd be so happy to get 40 little bee stings all over my head neck and shoulders. We gotta do, what we gotta do! Yes, no cure is right…sad but true for now. Be well in managing your pain today. Its really hard to live with such uncertainty but talks like this help to know we are not alone.
All the best,
Rachel

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@rwinney

Hi @azza1
Thank you for your response. Im so glad to hear botox injections bring some relief to you. I receive botox in the same areas and I count down the days in my final month until next visit. Never thought I'd be so happy to get 40 little bee stings all over my head neck and shoulders. We gotta do, what we gotta do! Yes, no cure is right…sad but true for now. Be well in managing your pain today. Its really hard to live with such uncertainty but talks like this help to know we are not alone.
All the best,
Rachel

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I always thought Botox was supposed to last a while, you get 40 injections every month? I also get pain/headaches in the back of my head and neck but NSAIDS usually do the trick. (for now)

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@helennicola

I always thought Botox was supposed to last a while, you get 40 injections every month? I also get pain/headaches in the back of my head and neck but NSAIDS usually do the trick. (for now)

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Botox is typically covered by insurance every 3 months however, for me, it begins wearing off after 2 months. Getting through that final 3rd month is challenging. I also take monthly Emgality self injections which has helped cut my migraines down to 3-5 per month. Im glad your getting relief with your current treatment.

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So sorry the insurance guidelines are so biased as to prevent you and others all the medical help you need, I hope to see the day that drug co.’s are forced to reign in their costs, but I won’t hold my breath.

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@artscaping @jimhd @johnbishop has anyone here tried IVIG for their SFN?

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@albiet

@artscaping @jimhd @johnbishop has anyone here tried IVIG for their SFN?

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@albiet I have not tried IVIG since it's only for pain symptoms as far as I know and I don't have any associated pain just numbness.

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@albiet

@artscaping @jimhd @johnbishop has anyone here tried IVIG for their SFN?

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I haven't tried it. Maybe it's something I should look into.

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@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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@artscaping

@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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No 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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@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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