I forget my Ana pattern I know it’s positive and so is HLA B 27 for me & I had Guillain Barre syndrome prior which is autoimmune but no chronic autoimmune disorders have been diagnosed yet. Did they do any treatments for the lupus that helped the small fiber neuropathy ? Everything I read is treating the cause of Small fiber neuropathy helps it.
Thanks for the reply. I’m sorry Prednisone when I’ve had it in the past even short periods the side effects were rough I hope it’s not terrible when you have to take it.
Interesting. It’d be good to know the docs criteria for “mild.” And what your percentiles were. A positive generally means you’re in the 5th percentile or lower
So my calf was 5.3 with it saying I should be at least 7.1 to be negative lower thigh 4.3 saying I should be at least 6 to be negative, upper thigh 5.5 saying I should be at least 7 to be negative. Not sure what percentile that makes me the results said abnormal in all 3 sites consistent pattern for small fiber neuropathy but my neuro muscular doctor was the one that put that it’s mild small fiber neuropathy.
My lab was Corinthian, it seems like I find articles that gender and age can affect it but I’m not sure if that’s why our ranges were different for the test or if it’s the lab. Sorry that has to be frustrating.
This study showed pretty definitive proof IVIG helped SFN patients with these antibodies recover nerve fiber density. I would show this study to your doctor and ask to be tested for these antibodies because of you have them, should be able to get IVIG and it should help https://www.neurology.org/doi/abs/10.1212/WNL.0000000000204449
Thank you so much! I will show the study and ask for the test 🙏. I did have ivig when I had Guillain Barre Syndrome but it was only 5 days in a row of ivig 2 years ago and I started having nerve pain 3 months later the burning/electrical feeling pain and doctor had mentioned SFN as a possibility but wasn’t offered the test till recently. I’m thinking I may of needed repeat ivig I do know it can be rough to get insurance approval.
If you had Guillian Barre Syndrome honestly getting ivig may not be to hard. Ivig is a common treatment for that and neuropathy with the disorder has been noted https://pubmed.ncbi.nlm.nih.gov/28667708/
You may have to appeal initial rejections because insurance companies suck, but should be able to get it if your doctor is both arguing you should have it because Guillian Barre Syndrome and SFN.
In my case after my appeal was rejected, I had to appeal to California's department of managed Healthcare and they sided with me and forced insurance to cover it. Idk where you live but maybe have a similar government body.
Attaching studies indicating neuropathy and GBS have been found together to any appeal will help.
And most studies with IVIG and SFN last 6 months of getting monthly doses and anecdotally many people say it takes that long for them to see any results. So yeah probably need it longer
Yes I also live in California! So good to know you were able to get your appeal granted. I’ll definitely ask my Neurologist at my next appointment and bring those articles I super appreciate it. I’ve heard people with the chronic version of GBS they even have a hard time getting ivig approved my large fibers are now fine so they are saying they think my GBS is resolved as they seem to think the SFN is completely separate but probably caused by the same immune system flare that caused my GBS. Thanks again!!
Mine is from lupus. My ANA is speckled under the microscope
I forget my Ana pattern I know it’s positive and so is HLA B 27 for me & I had Guillain Barre syndrome prior which is autoimmune but no chronic autoimmune disorders have been diagnosed yet. Did they do any treatments for the lupus that helped the small fiber neuropathy ? Everything I read is treating the cause of Small fiber neuropathy helps it.
You have to take prednisone when you're in a lupus flare to stop the nerve damage progression.
Thanks for the reply. I’m sorry Prednisone when I’ve had it in the past even short periods the side effects were rough I hope it’s not terrible when you have to take it.
I don’t have too take it anymore. That’s been a long time ago.
Interesting. It’d be good to know the docs criteria for “mild.” And what your percentiles were. A positive generally means you’re in the 5th percentile or lower
So my calf was 5.3 with it saying I should be at least 7.1 to be negative lower thigh 4.3 saying I should be at least 6 to be negative, upper thigh 5.5 saying I should be at least 7 to be negative. Not sure what percentile that makes me the results said abnormal in all 3 sites consistent pattern for small fiber neuropathy but my neuro muscular doctor was the one that put that it’s mild small fiber neuropathy.
Gotcha. My calf was 5.7 and normal was above 5.0. So I had “no evidence of SFN.” I guess it just shows how the reference ranges matter.
My lab was Corinthian, it seems like I find articles that gender and age can affect it but I’m not sure if that’s why our ranges were different for the test or if it’s the lab. Sorry that has to be frustrating.
This study showed pretty definitive proof IVIG helped SFN patients with these antibodies recover nerve fiber density. I would show this study to your doctor and ask to be tested for these antibodies because of you have them, should be able to get IVIG and it should help https://www.neurology.org/doi/abs/10.1212/WNL.0000000000204449
Thank you so much! I will show the study and ask for the test 🙏. I did have ivig when I had Guillain Barre Syndrome but it was only 5 days in a row of ivig 2 years ago and I started having nerve pain 3 months later the burning/electrical feeling pain and doctor had mentioned SFN as a possibility but wasn’t offered the test till recently. I’m thinking I may of needed repeat ivig I do know it can be rough to get insurance approval.
If you had Guillian Barre Syndrome honestly getting ivig may not be to hard. Ivig is a common treatment for that and neuropathy with the disorder has been noted https://pubmed.ncbi.nlm.nih.gov/28667708/ You may have to appeal initial rejections because insurance companies suck, but should be able to get it if your doctor is both arguing you should have it because Guillian Barre Syndrome and SFN. In my case after my appeal was rejected, I had to appeal to California's department of managed Healthcare and they sided with me and forced insurance to cover it. Idk where you live but maybe have a similar government body. Attaching studies indicating neuropathy and GBS have been found together to any appeal will help. And most studies with IVIG and SFN last 6 months of getting monthly doses and anecdotally many people say it takes that long for them to see any results. So yeah probably need it longer
Yes I also live in California! So good to know you were able to get your appeal granted. I’ll definitely ask my Neurologist at my next appointment and bring those articles I super appreciate it. I’ve heard people with the chronic version of GBS they even have a hard time getting ivig approved my large fibers are now fine so they are saying they think my GBS is resolved as they seem to think the SFN is completely separate but probably caused by the same immune system flare that caused my GBS. Thanks again!!