RichGotsPots Posted February 24, 2013 Report Share Posted February 24, 2013 I'm trying to see out of all of us who go the SFN skin Biopsy, how many of us were positive. Quote Link to comment Share on other sites More sharing options...
arizona girl Posted February 24, 2013 Report Share Posted February 24, 2013 Rich, I'm confused about your poll. My skin biopsy on my hip and leg was for small fiber neuropathy. The results said normal at the hip and reduced densisty at the ankle consistent with length or was it non length dependent neuropathy. The report did not use the language autonomic. This biopsy was done in my neuros office and sent to a lab for diagnostics.I also had a lip biopsy done by a rheumy a few years later because I have symptoms of sjogrens. That biopsy was completely different as they took minor salivary glands. The results came back showing infliltrates but not high enough to confirm sjogrens.So the way you've put the poll together is confusing to me. On the other small fiber neuropathy poll out of about 50 members answering only about 4 of us have had skin biopsy.So how is the follow up going since your skin biopsies came back? Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted February 25, 2013 Report Share Posted February 25, 2013 Lip? You've lost my but im intrigued. Quote Link to comment Share on other sites More sharing options...
RichGotsPots Posted February 25, 2013 Author Report Share Posted February 25, 2013 1st thing is that there are a bunch of different type of skin biopsies. for example there is an EDS skin biopsy or a mastosis skin biopsy and a bunch of others. The one I'm asking about is a small fiber neuropathy skin biopsy. This tests the sweat gland autonomic nerves. The main lab in the USA that does this skin biopsy is https://www.therapath.com/ The reason for the lip biopsy is to rule out a bunch of different autoimmune things that could cause SFN. Its the next logical test after blood work to check a bunch of causes like diabetes.. Lip biopsy (specifically the minor salivary glands of the lip) may also be used to assist in the diagnosis of Sjogren syndrome, a chronic autoimmune disorder involving the destruction of glandular tissue. The glandular tissues involved include both minor and major salivary glands and the lacrimal gland. Other systemic disorders, such as sarcoidosis, lupus, amyloid polyneuropathy, and neonatal hemochromatosis may be confirmed with a lip biopsy Quote Link to comment Share on other sites More sharing options...
RichGotsPots Posted February 25, 2013 Author Report Share Posted February 25, 2013 One of the issues is that the neuro is the one to order the skin biopsy but them the Rheumatologist is the one to order the lip biopsy. So I'm going to a top Rheumatologist this week who will most likely order the lip biopsy.. Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted February 25, 2013 Report Share Posted February 25, 2013 Wouldnt it be treated the same whether it was caused by Sjorgens or Lupus or just idiopathic (which is associated with TNF alpha, autoantibodies to something or other and/or abnormal sodium channel activity). Quote Link to comment Share on other sites More sharing options...
RichGotsPots Posted February 26, 2013 Author Report Share Posted February 26, 2013 Wouldnt it be treated the same whether it was caused by Sjorgens or Lupus or just idiopathic (which is associated with TNF alpha, autoantibodies to something or other and/or abnormal sodium channel activity). The lip biopsy is just the only 100% sensitive test for the above mentioned conditions. Blood testing like ANA are indicators and are usually less then 50% sensitive. I've spoken to about 50 ppl so far with autoimmune and Dysautonomia and ones who had the lip biopsy only about 20% had high ANA or other blood test indicators the other had no indicators yet the lip biopsies revealed without a doubt some of the conditions listed above. So personally the 2-3 week of lip discomfort is worth it to know for sure. The only way the lip biopsy is inaccurate is if the disease is in a very low stage, even though I dont think it has to be full blown or the sample is mishandled. Sometimes the oral surgeon misses a salivary gland completely... Treatment varies greatly for all the conditions mentioned above, but what I am finding is that most autoimmune condition can benefit from IVIG and even Sarcoidosis with SFN has a 33% improvement rate with IVIG according to Cleveland and sarcoidosis isnt even autoimmune. Something uncanny and obvious to me is that autoimmune and dysautonomia have almost the same % affect of woman vs. men. 80% of autoimmune disease affect woman. Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted February 26, 2013 Report Share Posted February 26, 2013 Yeah it often made me wonder why some groups weren't keen to investigate autoimmune or cytokine mediated etiologies Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted February 26, 2013 Report Share Posted February 26, 2013 The 80% female thing and onset after stressors like pregnancy have always suggested autoimmunity. Quote Link to comment Share on other sites More sharing options...
RichGotsPots Posted March 10, 2013 Author Report Share Posted March 10, 2013 On facebook there is a Sjogren's and POTS group with almost 50 members. It makes me wonder if there aren't so many more ppl with autoimmune mediated POTS, but that after the blood antibodies come back negative they give up looking.. I have heard of ppl going to a big pots clinic and they don't find titers but still diagnose autoimmune and treat with IVIG.. Wish that clinic was closer :/ Quote Link to comment Share on other sites More sharing options...
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