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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Rachel, Volunteer Mentor | @rwinney | Nov 17, 2019

In reply to @klro0001 "@rwinney My fingers are crossed for you as well. 🤞🏾Praying that medical cannibus provides the relief..." + (show)

Thank you Kia. What has been new or different in your journey since we last spoke?

klro0001 | @klro0001 | Nov 17, 2019

In reply to @rwinney "Thank you Kia. What has been new or different in your journey since we last spoke?" + (show)

Hi, Rachel!

Thanks so much for asking. There’s nothing new or different at this point. It’s good in the sense that I’m not in pain or getting worse, but it’s not so good because the not knowing is doing a number on my anxiety. But, I’m not as anxious as I was initially. I realize that I have so much love and support from so many people in my life, and that’s a blessing no matter the outcome. One day when I was lying around feeling sorry for myself, my husband looked at me and said, “Worrying doesn’t take away tomorrow’s troubles, it takes away today’s peace.” He probably got that from a fortune cookie or some other source but it makes sense. So I’ve stopped spending every free moment researching neuropathy and planning for the onset of pain (I’ve limited it to 2 hours a day 😃). I’ve also started meditating and I resumed working out at the gym. I’ve decided that I’m going to keep on living my life to the fullest for as long as I can. My appointment with my new neurologist is on December 4th. I’m asking for bloodwork and a skin punch biopsy. I’ll be sure to let you guys know how it goes.

Kia

Rachel, Volunteer Mentor | @rwinney | Nov 17, 2019

In reply to @klro0001 "Hi, Rachel! Thanks so much for asking. There’s nothing new or different at this point. It’s..." + (show)

You crack me up. Hahaha...I would have thought the same thing if my husband said that to me but, would have thought it was a Bruce Lee quote as my hubby is a big fan. Well, those words were spot on regardless. Such truth. Keep up the good work and I will continue to send positive thoughts your way for Dec 4th and beyond.
Rachel

jager5210 | @jager5210 | 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)

Hi Carol,

Were you diagnosed with SFN via a skin biopsy? Are you better now?

albiet | @albiet | 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 i only saw that 1 trial of 21 people. Have you seen anything else on it that would give it credibility ?

Jim, Volunteer Mentor | @jimhd | Nov 17, 2019

In reply to @albiet "@jimhd i only saw that 1 trial of 21 people. Have you seen anything else on..." + (show)

@albiet I haven't taken the time to research it. The feeling I got reading this article is that it didn't sound particularly well written, and, as you said, it's a mighty inadequate bit of research, which neither impresses me, nor did it convince me to send in an order.

Jim

albiet | @albiet | Nov 17, 2019

In reply to @jimhd "@albiet I haven't taken the time to research it. The feeling I got reading this article..." + (show)

@jimhd . Thanks for confirming what I thought.

cncwi17 | @cncwi17 | Nov 17, 2019

In reply to @jager5210 "Hi Carol, Were you diagnosed with SFN via a skin biopsy? Are you better now?" + (show)

I took a test in a hospital. I forgot the name of the test. It involved wires that were placed on my skin. It was painful.

cncwi17 | @cncwi17 | Nov 17, 2019

In reply to @jager5210 "Hi Carol, Were you diagnosed with SFN via a skin biopsy? Are you better now?" + (show)

I still have the numbness in my right leg, ankle, foot and toes. Also, my left foot and toes too. I am seeing a naturopathic doctor for this. Long story. She has over 40 years of experience in this field and taking classes to always learn new things. Her name is Dr. Janet Opila-Lehman in Asheville, NC. I am taking various supplements and watching my diet. Take a food intolerance test. She told me to take the OAT test. Organic acid test. It was tests 75 different things, especially candida, which i HAVE and other issues. Pricey test, but well worth it. I also have leaky gut syndrome. My doctor and I both suspect mutated genes has a part in my problems, I also have tinnitus.