Thanks, JJ.
I’ve already been diagnosed with SFN via a skin biopsy and we know that I have autonomic dysfunction, so testing won’t do much. My neuro just went on the basis of the biopsy and my symptoms. The suspicion is that it’s autoimmune, but we’re not sure. There are no markers yet, but I can perhaps have some further testing done. The thing is that even if I have a given marker or two, indicating possible autoimmune and/or inflammation, it still won’t be as useful as a diagnosis of a specific condition. SFN and autonomic dysfunction are symptoms. Physicians where I am are less likely, perhaps entirely unlikely, to treat with just some generalized autoimmune and/or inflammatory markers. But I’m leaning more and more toward heading to the US and getting tested at some major center.
As for treatment, I would need a specific diagnosis to have it done here, but perhaps some markers would help. At this point, things have no gotten much worse, and there has been some improvement, all thanks to a complex of supplements and a specific paleo ketogenic diet. My situation is almost certainly gut mediated, so before taking any serious pharma treatments, given the improvement I’ve seen naturally so far, I am working on healing my gut. I will see what comes of it. But I’m still pursuing a diagnoses of the cause of my SFN, which is both sensory and autonomic.
I wish you good luck with the new treatment, and appreciate the information about the testing at Mayo. I’ll print that and show it to my neuro when I next see him. Perhaps some day I’ll need some pharma treatment, but so far things have not escalated to that degree. But I do want to see if I have a known condition causing it.
David
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Originally Posted by JJ33
Hi David,
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Anyway, if you can get tested for autonomic dysfunction, like a tilt table test for POTS, (if you are dizzy and have fast heart rate and low blood pressure) and there are lots of other tests, then autonomic neuropathy is a diagnosis. Autonomic and sensory neuropathy go together, I have both too. If you test positive for any one of the many antibodies that can cause it, like on the Mayo panel I referenced, then that is proof of an autoimmune cause of the neuropathy. Other blood tests, like sed rate, fibrinogen, and Factor 8 levels also can indicate there is inflammation. There are many treatments for autoimmune neuropathy disorders. I have been on meds, plasmapheresis, and IVIg. Rituxan infusions seem to be in favor right now, according to the autonomic neurologist I recently saw. You need high doses for, like, a year. I am supposed to start that treatment soon. The meds I have been on have helped me but not enough to stop it from continuing. My doctor said that as long as I still have any neuropathy, it is worth treating. Believe me, I took many many supplements to help quiet my immune system, and improve my leaky gut, etc, and they are not nearly as powerful as the meds. It can be a two-edged sword, because there are risks and side effects. But for me, the GAD65 antibodies I have can also cause other problems, like encephalitis. So getting their levels reduced is a priority for me that I couldn't do with the many supplements I tried. I am on 5 other meds to control the autonomic symptoms, to raise my blood pressure, slow my heart rate, and help bladder and bowel problems. Without them I am in bed all day. I also thought for a long time I had Sjogren's--I have SSA antibodies, but the GAD65 antibodies are more often associated with the autonomic problems, and autonomic problems can cause sicca symptoms. Look *admin edit* for a university affiliated neurologist who specializes in autonomic neuropathy. They are most likely to be able to find out what is going on with you. I have been to many neurologists, and finally the autonomic specialists were much more in tune with my condition. And I went EVERYWHERE!!!! If you are interested in supplements, look up Nutrinerve. It is a combination of supplements that have been shown to help nerves heal. I saw Dr. Vinik, who developed the supplement, he was excellent, but no longer has an autonomic neuropathy lab for testing.
JJ
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