I'm at wit's end. I started having proximal muscle weakness with exertion February of 2009. After seeing a neurologist and a neuromuscular specialist I was offered a muscle biopsy March of of this year (tests for MG antibodies, NCV, and EMG were negative). The biopsy showed a dysimmune process consistent with either systemic disease or paraneoplastic vasculitis. There is inflammatory infiltrate around the small caliber vessels, nerve loss, and muscle atrophy and necrosis.

After about a year of just weakness followed by pain on the days following overexertion I started to experience pain with exertion, distally and proximally. Now I also occasionally have tingling and/or burning sensations in various parts of the body and cramping when using tired muscles.

I've tested negative for connective tissue autoimmune diseases, and the known vasculitides, and my inflammatory markers (ESR and CRP) have always been negative. My rheumatologist wants to refer me out of state to see a neurologist but is trying to figure out what else to do here because we don't expect my HMO to agree to this referral.

I kind of want to give up the quest for a diagnosis. Right now I'm "okay". I've just had to give up many activities that I once enjoyed. I'm used to a level of low-grade chronic pain, don't medicate for it, and deal with the overwhelming fatigue that comes with too much exercise by backing off and resting for a few days. My rheumy says we have to figure this out now before too much damage is done. "Now" is dragging on and on.

How can I have inflammation going on in the body when I have no positive inflammatory markers? How can the docs figure out if this is a vascular disorder or a neuropathic disorder?

Thanks for any insight,
Athena