Diagnosed with Small Fiber Neuropathy.

[CallieAndToby]

So I finally got a biopsy last week and it came back positive but I don't know if it's autoimmune related. My pain started when I was a teenager so I've tried many of the antidepressant / pain meds and they just don't work (Cymbalta, Gabapentin, try-cyclics). I also read that SFN affects bowels, bladder, GI tract, autonomic, and those are all major issues for me so I'm looking for more of a resolution and not just treat the pain. A lot of websites say that there is usually a root cause (unless idiopathic) and they list many diseases and disorders but I wouldn't know who to see to investigate all that was mentioned. I don't have diabetes or pre diabetes which is mentioned a lot so that can easily be ruled out. Wondering what others on the forum have done? I don't know much about this. 

[RecipeForDisaster]

I’m booked for a biopsy in August, and I have very high IGG vs. FGFR3 which is connected to SFN. That’s part of the Washington University neuropathy panel, if you can get that. I have no reason to have it either. I assume it’s autoimmune with that antibody showing up, but no one really knows.

Acetylcarnitine and alpha lipoic acid have helped my burning neuropathy symptoms, at least. But I now have trigeminal neuralgia as well, so I’m on carbamazepine and Lyrica. I don’t think those have helped the neuropathy.

[CallieAndToby]

17 minutes ago, RecipeForDisaster said:

I’m booked for a biopsy in August, and I have very high IGG vs. FGFR3 which is connected to SFN. That’s part of the Washington University neuropathy panel, if you can get that. I have no reason to have it either. I assume it’s autoimmune with that antibody showing up, but no one really knows.

Acetylcarnitine and alpha lipoic acid have helped my burning neuropathy symptoms, at least. But I now have trigeminal neuralgia as well, so I’m on carbamazepine and Lyrica. I don’t think those have helped the neuropathy.

Thank you for the info. I've never heard of the neuropathy panel but I definitely need somebody to take a good look into this and do further testing! I have had some autoimmune labs pop up as positive in the past (Anti DSDNA positive twice and anti GAD positive). My pain started in my bladder, then my shins (so awful), then my hands. They even did surgery on one of my shins a long time ago and it didn't help so it's nice to have answers but I don't understand why this wasn't checked before with my constellation of symptoms. My mother actually requested the testing by mouth and by written letter. Let me know how the testing goes! Hopefully we can both find some answers and/or good treatment. 

[Jyoti]

I saw Kamal Chemali several times over the past year make presentations on SFN.  He is Lauren Styles neurologist, I believe, and well-regarded by most.  I don't know if you have seen him speak, @CallieAndToby, but if not, it might be worth your time.  I am not sure this will speak to your experience directly, but there may be a point or two you can glean.  https://vimeo.com/479508085 

[RecipeForDisaster]

14 hours ago, CallieAndToby said:

Thank you for the info. I've never heard of the neuropathy panel but I definitely need somebody to take a good look into this and do further testing! I have had some autoimmune labs pop up as positive in the past (Anti DSDNA positive twice and anti GAD positive). My pain started in my bladder, then my shins (so awful), then my hands. They even did surgery on one of my shins a long time ago and it didn't help so it's nice to have answers but I don't understand why this wasn't checked before with my constellation of symptoms. My mother actually requested the testing by mouth and by written letter. Let me know how the testing goes! Hopefully we can both find some answers and/or good treatment. 

Yeah, I have persistently positive ANAs as well (speckled and homogeneous). I’m not sure we have looked at GAD. Good luck! 
 

I'm going to look into Dr. Chemali, too. Thanks!

[CallieAndToby]

4 hours ago, Jyoti said:

I saw Kamal Chemali several times over the past year make presentations on SFN.  He is Lauren Styles neurologist, I believe, and well-regarded by most.  I don't know if you have seen him speak, @CallieAndToby, but if not, it might be worth your time.  I am not sure this will speak to your experience directly, but there may be a point or two you can glean.  https://vimeo.com/479508085 

Thank you both for the recommendation. I'd like to hear him speak on this.  

[ramakentesh]

Ive had small fiber neuropathy diagnosed twice. Other than itching and not being able to tell temperature in my feet luckily i had no other symptoms. 

[RecipeForDisaster]

59 minutes ago, ramakentesh said:

Ive had small fiber neuropathy diagnosed twice. Other than itching and not being able to tell temperature in my feet luckily i had no other symptoms. 

That was the striking thing for me. No ability to tell temperature in my legs and feet. I didn’t know until the (4th) neurologist tested it recently. I am itchy randomly, like I have a tick on me, here, and then there, but I never connected it to neuropathy. I have horrible burning pain in my feet at night, though.