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
John, Volunteer Mentor | @johnbishop | Jan 6, 2020
In reply to @jennyw "Hi John, I started another discussion which details my experience. I can't work out how to..." + (show)
@jennyw

Hi John, I started another discussion which details my experience. I can't work out how to connect that discussion but it was titled 'Gluten intolerance and peripheral neuropathy'.

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Hi Jenny @jennyw, it looks like you found it as I see you just posted a question there....
https://connect.mayoclinic.org/discussion/gluten-intolerance-and-peripheral-neuropathy/?pg=1#comment-357409
You may want to bookmark the discussion by clicking the bookmark icon. This will create a bookmark to the discussion and place it in your Profile - My Bookmarks section. Then you can easily click on your profile at the top right and select My Bookmarks then click on the bookmark to this discussion.
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John, Volunteer Mentor | @johnbishop | Jan 6, 2020
In reply to @albiet "@johnbishop John and and anyone that can comment, I’ve been feeling terrible lately and wondering if..." + (show)
@albiet

@johnbishop John and and anyone that can comment, I’ve been feeling terrible lately and wondering if anyone would attribute these to SFN - tinnitus, exhaustion , chattering teeth, tingling buzzing in extremities. I’m at my wits end.

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@albeit I'm sorry to hear you are feeling terrible and are at your wits end. I know it can be difficult dealing with neuropathy. My only symptom from my small fiber PN is numbness so I don't need the pain meds. I take supplements which have helped get rid of pain symptoms for others taking the same supplements. I shared my story in an earlier post along with the links to where I found the supplements in a closed Facebook group. Here's a link to the post - https://connect.mayoclinic.org/discussion/anyone-here-dealing-with-peripheral-neuropathy/?pg=42#comment-65985

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katec | @katec | Jan 6, 2020

Is there anyone else doing The Protocol or have tried it?

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2 replies
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Rachel, Volunteer Mentor | @rwinney | Jan 6, 2020
In reply to @katec "Is there anyone else doing The Protocol or have tried it?" + (show)
@katec

Is there anyone else doing The Protocol or have tried it?

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Yes. John can probably find you the prior discussion on this.

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Mentor
John, Volunteer Mentor | @johnbishop | Jan 6, 2020
In reply to @katec "Is there anyone else doing The Protocol or have tried it?" + (show)
@katec

Is there anyone else doing The Protocol or have tried it?

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I’ve been on it since Sept 2016 but I only have numbness. I feel it has stopped the progression of PN in my legs. After 2 months of taking it, the numbness was reversed some but no progress since but it hasn’t gotten any worse either. The Facebook group has over 9000 members, a lot who have pain and other symptoms which have been relieved without having to take any drugs. You can find all of the success stories by searching the group using #theprotocolworks.

Here’s the link to the group which you need to join and will have a lot of reading to do.
http://www.facebook.com/groups/spnpd

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1 reply
katec | @katec | Jan 6, 2020
In reply to @johnbishop "I’ve been on it since Sept 2016 but I only have numbness. I feel it has..." + (show)
@johnbishop

I’ve been on it since Sept 2016 but I only have numbness. I feel it has stopped the progression of PN in my legs. After 2 months of taking it, the numbness was reversed some but no progress since but it hasn’t gotten any worse either. The Facebook group has over 9000 members, a lot who have pain and other symptoms which have been relieved without having to take any drugs. You can find all of the success stories by searching the group using #theprotocolworks.

Here’s the link to the group which you need to join and will have a lot of reading to do.
http://www.facebook.com/groups/spnpd

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@johnbishop I will check it out! Thanks!!

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1 reply
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Rachel, Volunteer Mentor | @rwinney | Jan 6, 2020
In reply to @katec "@johnbishop I will check it out! Thanks!!" + (show)
@katec

@johnbishop I will check it out! Thanks!!

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Hi Kate
I've been taking this protocol for 4 months with slight alterations. My neurologist recommended Acetyl L Carnatine and Alpha Lipoic Acid but, only when I asked him. Never offered it up as a suggestion prior. I think its worked well overall. It's no game changer for me pain wise but always hoping it's having a positive effect. Another good possibility to add may be Turmeric. Good luck if you decide to try it for your son and might want to run it by his Dr. first. Take care.
Rachel

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ruthofanne | @ruthofanne | Jan 6, 2020

Be careful with Turmeric. I was happily taking it until my neurologist told me it could make my SPN worse because it elevated vitamin B 6. He tested my B6 levels and it was quite high so he strongly advised me to stop taking it. I take Alph Lipoic Acid, but have not noticed any change. Not sure what L Carnatine is, but will check it out

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1 reply
Mentor
Rachel, Volunteer Mentor | @rwinney | Jan 7, 2020
In reply to @ruthofanne "Be careful with Turmeric. I was happily taking it until my neurologist told me it could..." + (show)
@ruthofanne

Be careful with Turmeric. I was happily taking it until my neurologist told me it could make my SPN worse because it elevated vitamin B 6. He tested my B6 levels and it was quite high so he strongly advised me to stop taking it. I take Alph Lipoic Acid, but have not noticed any change. Not sure what L Carnatine is, but will check it out

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Ahh, interesting. Makes sense.

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