I am not diagnosed with anything yet, other than paraneoplastic vasculitis. The autoimmune vasculitis was found on muscle biopsy and seems most consistent with a paraneoplastic process. The paraneoplastic part has not been confirmed or ruled out. It's been a really long process getting testing approved, etc. But I digress.

I was going to ask a similar question of my rheumatologist when I see her on Tuesday. Is all this weird stuff that comes and goes neuropathy, or what? When I'm moving around I have weakness after a bit. When I stand for more than a few minutes in one position my pelvis starts to feel unstable, tilting back and forth, and I have to steady myself by touching something, so I try not to stand talking with someone unless there's something nearby to rest on. I take a walking stick when out walking. The tinglings, burnings, and numbness move from body part to body part from day to day with periods of no sensory weirdness. Like you, I feel the sensory stuff only when not moving around. When I wake up in the morning I just ache from my skin to my marrow. Usually the ankles and/or hips are wobbly when I try to get going from getting out of bed. After some movement those feelings go away. And, for the first year of this disease process I had only exertional weakness, no sensory stuff.

Is this neuropathy if it comes and goes like this? Is it related to the vasculitis?

How was your sensory-motor neuropathy diagnosed? I'm wondering if I should ask for a repeat of the NCV and EMG that I had done a year ago which were negative.

Athena