Quote:
Originally Posted by LouLou1978
My tests have all come back normal. Nothing to show it was immune mediated. My neuro says nld sfn is an inflammatory neuropathy. He is very clever and got my trial of ivig agreed through the panel. He also got another lady on this site ivig. Her previous neuro would not entertain it. Mat have you thought about being referred to London and see the professor there who specialises in sfn and skin biopsies. Would it be worth having it done again?
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Definitely I will ask if this new hospital can't help. It's a big teaching hospital and I've yet to see the rheumatology consultant but I am really sick of being passed about from neurology to rheumatology (and also endocrinology next month). If the Sjogren's test is negative then I plan to ask the neurologist about getting a second opinion. Does the fact that it started in my feet and now affects arms and legs and mouth mean NLD or LD SFN please? I'm from London originally and I might suggest that I pay for my own travel and accommodation if they will refer me. I am fairly sure that the neurologist here won't agree as she was pretty dismissive but the rheumatologist and oral consultant seem fairly on the ball. Thanks for your helpful suggestion. Great to find someone in UK who can advise and explain more.