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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 was diagnosed with SFN just a year ago. Burning sensation from my butt to my feet. Sometimes in my arms. I am on 3,000 mg of Gabapentin spread throughout the day. That’s a high dose but I tolerate it quite well. That has really helped tremendously. I have Fibromyalgia diagnosed 30 years ago so since that is an autoimmune issue I already had I think that’s what led to my diagnosis. BUT with all the bloodwork I have had, I’ve never had any indication of autoimmunity in my body so all diagnoses given have been based on symptoms alone.
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1 ReactionIf you tolerate the Gabapentin well consult your doctor to see if he/she will increase it. I am on 3000 mg a day now and that has helped tremendously.
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2 ReactionsHi ,
if you have idiopathic Small Fiber Polyneuropathy and you have the same symptomes like me . My medication reduce the pain by 70 % . The docs tried alot of medications with me before we reach to this combinations . The main one of this list is the Decarb high CBD .
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3 Reactions@cmartinjr, You may need to adjust the gabapentin to get a better dose at night for sleeping without the tingles, needles, and burning. I do not handle gabapentin well during the day and have found medical cannabis to control the pain quite well.
However, for nighttime medication, I take 1200 mg of gabapentin and a cannabis tincture. It works very well and even assures that when I wake up in the morning, the pain will be moderate.
Keep experimenting with dosages and medications that can help. Let me know if you want more information on medical cannabis. Be safe and protected tonight. Chris
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2 Reactions@assa1, and @katec, Just a friendly reminder about using medical cannabis. Never on an empty tummy. And never with alcohol.I sometimes do my prunes first or cereal and fruit. I had my worst bouts with unwanted reactions twice. You would think I had learned to follow my own guidelines. Nope...just forgot. Be happy and at peace. Chris
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2 ReactionsThanks for the info, but I sleep well at night. I am very blessed there. My pain is during the day and very bad when on my feet. I also experience times of cold feet and maybe later the same day burning feet. It seems my feet can not tolerate pressure of standing or tight socks or shoes. I have tried several meds with no good results, but going back now and trying Gabapentin again, increasing the dosage. I have also tried CBD from a local supplier without any improvement in the pain. However, I have not tried or don't know Where to get Decarb CBD. My family Dr has been helpful in trying different meds and I have seen 2 Neurologists and they seem to know nothing about neuropathy. Can you share more about how to get Decarb CBD? Thanks for your interest in helping those of us that don’t know where to go next.
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2 ReactionsPlease, what brand of CBD with pain reliever cream do you find effective? I have the same PN symptoms but have found only small help so far with the CBD creams I have tried. Thanks, Terry
@katec I don't remember if I told you that after trying all but a few at the very bottom of the list, we hit on imipramine. I did experience some side effects as I slowly increased the dosage to where I am at 100mg, but my thinking is clear again. Sometimes I think that we don't give new meds enough time - both for the body to adjust to them so side effects subside, or for the medication to have time to begin reducing the pain. Sometimes I think that I should go back and retry some of those meds and give them that extra time, though not back to the ones that had really serious side effects, like the one that put me in the hospital. For now, though, I'll stick with Imipramine for as long as it does its job.
Your son is on our daily prayer lists.
Jim
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3 Reactions@jimhd Thank you for the suggestion! I will mention that one as it isn’t one he’s tried before. I agree with you about going back to try meds. He was really young when we first started trying different meds and I think doctors were unsure about dosage, but now that he’s an adult weight I’d like to revisit some of those meds to see if they’ll bring him any relief! Thanks again!!
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1 Reaction@azza1 can i ask you what decarb high cbd is? is that a brand od cbd?. also, i was curious if you take lyrica brand or the generic. since you are a pharmacist, i was wondering if there is a big difference in the brand vs generic. thank you