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Originally Posted by en bloc
Let me clarify. When your CRP was 160 last week were your symptoms worse? When your CRP dropped to 17 on Monday, were your symptoms better? In other words, do YOU feel the changes in CRP/ESR?
I agree that your immune system is likely at the root of this and that is why the IVIG might help to modulate it. I understand the NHS makes it hard to get approved, but if you have a positive skin biopsy and at least a positive ANA long with your swings of inflammatory markers, it could EASILY be argued that this comes from an autoimmune basis even though you haven't identified which AI disease. This is what I think you should present to your neuro.
The pain from SFN can certainly affect the mouth, nose, tongue, etc.
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Hi again Enbloc. The point is that my ESR has been steadily rising over six months and is now at 78 (normal 0-10) - which is pretty high even for me. My CRP swings from low to raised to soaring back down again over a space of days so no it doesn't reflect my neuropathic pain really. But my ESR does seem to reflect the neuropathy perfectly - to the point I can predict exactly how high it is by the stiffness, nerve pain and how lousy and fatigued I feel.
My ANA was negative, as were my other autoantibodies apart from my rheumatoid factor, which was low positive when last tested a few years ago.
I'm told it is my high ESR which means I certainly have clearcut autoimmunty. My CRP usually hovers around 12/13 and is only usually checked occasionally.
But if my autoantibodies are the measure my neurologist relies on as you suggest then a) he doesn't know much about autoimmune diseases and b) I will never get offered Ivig by him. He needs to think outside the box with me because I'm very unusual to have this huge discrepancy between my wild CRP swings and consistently my high ESR. What these two consultants confirmed is that all this is definitely autoimmune - it's just how to get anyone to recognise or take responsibility for treating it.
Hope this makes more sense now I've explained in seronegative but very inflamed.