I have been under a neurologist but my main specialist is a rheumatologist. He says he thinks I have a small fiber neuropathy as part of my RA. He never wanted to investigate it further - was content just to call it mild and expected my GPs to prescribe some of the anti depressants and anti convulsants and wait until the joint swelling and stiffness returned in a way he could identify as active disease. Then I would have been offered one of the biologic therapies having failed three DMARDs to date. So I was off methotrexate for two nine month periods and also had spells on steroids. My ESR continued to fluctuate according to how I was feeling and how long I am off disease modifying drugs for.

I pushed my GP to refer me to the neurologist who feels he has ruled out anything more dramatic than mild small fiber neuropathy. I had nerve conduction tests, MRI of brain and cervical spine, serum blood tests for many things including Lyme, a lumbar puncture which was partially contaminated but they felt they got enough to rule out MS at least. And now the skin biopsies have shown up clear. I agree these weren't really length dependant as I would have preferred but they were out of their depth with me although they can't admit this of course!

For the past two years most of the pain appears to have been in my nerves and tendons rather than in my joints. I was briefly treated for Raynauds which they thought could explain the "tingling" but developed Erythromelagia and severe swelling from Nifedipine so this was stopped.

My pneumonia was only in one lung and came out of influenza A so my GP thought. It didn't show up in a chest X-ray so I think the two lots of antibiotics sorted it out but I've been left quite hoarse for months and as soon as my cough and flu symptoms started to die down the neuropathic pain returned with a vengeance. My GP feels hoarseness and TMD are part of my RA. I also have vestibular issues no one can account for which are really disabling me a lot of the time. I feel they are not seeing something but they have been quite thorough and this is the NHS so what can I do?

The parasthesia is bilateral and stretches the length of my entire legs and also affects my hands and arms. The main sensation during the day is of an unpleasant wetness from the feet up with pricking of skin. By night the pain grips my feet, ankles and shins and it's like being tortured with electrode stockings.

I always expect to find a rash but in reality nothing is visible. I have completely lost my sense of taste and smell, have periodic sores and bleeding from my nose and suffer from dry eyes. I think this may well all be Sjogrens related but last time my antibodies were checked about 18 months ago they were equivocal - negative ANA, Ro and La. So it would have to all be seronegative.

I do hope that I can tolerate the Imuran and that it works. For a while the neuropathy was thought to be a result of my two years on Methotrexate or Plaquenil but as it got worse after stopping these we stopped thinking this was the case. The fact my sed rate fluctuation corresponds so clearly with my neuropathic pain suggests to me and to my doctors that the neuropathy is part of the inflammatory process for me.

Does all this make sense more now? I don't really feel I belong to the world of arthritis much anymore but it seems they think I do.