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However on Monday my ESR had risen to 78 from 58 a few months ago so it's been steadily rising not falling. This makes them think that it is my immune system that is causing the inflammation. The only pain I suffer presently is nerve pain. I don't know if my ESR reflects inflammation exactly - but I feel it does whereas I don't think my CRP is affected by the neuropathic pain much. My ESR is always high and I always have some nerve pain but as the pain increases in intensity so does my ESR. The only time it lowered to 32 was when the nerve pain was much less prominent earlier this year and that was after I'd been taking Naproxen for a few weeks. Also it seemed to subside when I had flu and secondary pneumonia in March and when I was in hospital a month ago with acute abdominal pain. But it surged as soon as the acute pain/ infection diminished. It also surges/ flares up after any real exertion or travel and so does my ESR. I will do another chronological symptom list for these two appointment next week but I did explain this to the neurologist before and he noted that my ESR was the main blood test that is always pretty raised. The nerve pain isn't the only neuropathic symptom by any means. I get flashes of pain in my arms and hands and cold wet sensation in feet and legs as well as a feeling of crawling as if I were standing up to my thighs in cold water with little crabs and nettles. This has gone on for so long I've almost got used to it now though so the jaw pain is the worst. I would really like to be offered IViG but this is the NHS and my serum immunoglobulin was normal in January. The pain in my mouth/ jaw/ nose is exactly the same as everywhere else and my dentist says it isn't thrush, isn't root or tooth decay and isn't dryness from Sjogrens as my saliva ducts are working well. Thanks for your help it is much appreciated! Mat x
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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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