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I'm not at all confident that my skin biopsies were taken correctly since my GP offered to do them when I was ill with pneumonia. He was a little pushy as had never done this before and wanted the experience. He followed the neuro pathologist's instructions and took one punch biopsy from the outer side of each calf. Which makes me think that neither knew what to do properly! I may have to push to be sent to London for it although the big hospital I'm with now should be much better placed to know what to do. I know you are spot on because there is an article about it in an edition I have of the Brittish Sjogren's Syndrome Association magazine from earlier this year - in an edition dedicated to SFN and ganglionopathy of Sjogrens - showing photos of where the biopsy should be taken from. There seems to only be one from each leg though but these are far closer to the ankle than mine were. I'm also not that confident that the samples were stored and dispatched at the right temperature seeing as they were taken while on my island home and send to two different hospitals. So my rheumatologist refers to my SFN as presumed rather than clinically diagnosed. This is why I'm not that confident that I will qualify for any further immunesuppression such as Cellcept if there is no organ involvement showing up from my CT/ MRI. I will try to discuss this with my neurologist next month. I know you are very much further down the line than me with symptoms and signs, but out of interest had your SFN turned from being severely painful to tingly and somewhat numb by the time your second biopsies were taken? I'm just not that confident that my symptoms show a worsening, although I do believe that pain is an indication that the tiny nerves haven't yet died? So my lack of pain in legs and feet now may signify worsening rather than improvement? The burning pins and needles pain is worse in my hands and arms than in my other extremities, but really not too bad at all compared to this time last year.
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If you get lemons, make lemonade Sjögren’s, Hashimoto’s and Systemic Sclerosis with Raynaud’s, Erythromelagia and small fibre polyneuropathy, GI problems top to tail, degenerative disc disease and possible additional autoimmune diseases |
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