Hi - I posted recently about two nightmarish episodes which turned out to be pacreatitis as an allergic response to Imuran.

Yesterday I had a consultation with my neurologist followed by the maxillofacial surgeon. I'm not sure yet if either will lead to any very positive outcome or not. The neurologist was ready to be dismissive, having run lots of nerve conduction, MRIs, Serum bloods and a lumbar puncture back in January. Also having directed skin biopsies which my GP did from my calves. Nothing showed up he reiterated.

I was well prepared after my post and replies here and having got my latest old test results printed out. My ESR is 64 but my CRP is 5.6 having come down from a surge that caused it to rise to 160 a few weeks ago after taking Imuran. This discrepancy between CRP and ESR is really only seen in Lupus and yet I'm ANA and ANCA negative.

So I pointed out to him that the nerve pain fluctuates in line with my ESR - leading me to feel sure that this is part of my RA/ autoimmune disease. He seemed to come back on board without actually shifting visibly. We both ruled out GCA Vasculitis having established that this would certainly be a medical emergency by now and I don't get severe headaches and nor were my temple arteries especially raised.

I explained that now I have tried and had allergies and a bad response to four different disease modifying antirheumatic drugs I won't be allowed to try the more expensive biologics until my RA comes back as synovial swelling. So I explained that I need this small fiber neuropathy (which he reminded me was still unconfirmed medically) to become ab acknowledged symptom of my presentation of RA/ autoimmune disease.

He ran some pin tests on my distal nerves and found, once again, that sensation was less in my toes and fingers than in my mid arms and shins. He then said that he thought the best thing was for him to discuss this with my rheumatologist one-to-one. They might just form a united wall telling me that this is fibromyalgia I think. But as I don't really suffer from muscle pain and have recognised autoimunity and my ESR fluctuates with the pain I have something on my side. I refused to try the few remaining nerve drugs because I feel in so drug intolerant I only want drugs that tackle the cause rather than possibly helping with symptoms - at a price. He agreed with the rationale I offered on this.

I did ask about IVIG but he just looked astonished and said in all his years as a neurologist he had never used this to treat a rheumatic patient - although he has many with immune mediated neuropathies who get these infusions at his hospital.

The maxillofacial surgeon was nice and had done his homework. He dismissed Vasculitis as my ANCA is negative and GCA would have shown up differently by now. He examined my mouth and found my saliva ducts to all be normally productive so told me Sjogrens lip biopsy wouldn't be advised as it's quite an invasive procedure and would most probably be negative. Anyway there is no real treatment for Sjogrens he explained. Not sure about this but I've tried all the usual ones for my RA.

He said the jaw pain itself is common TMJ caused by bruxism/ stress which is causing muscle inflammation and tenderness. This is not same as neuropathy or arthritis and is probably the result of severe chronic pain that is currently untreated - which is causing my jaw to tense and grind and clench even though I wear a night guard and am not aware of doing this at all. I have booked to have a biopsy but can cancel or just discuss in a few weeks time and pull out of if I like.

Meanwhile the pain is flaring badly in my legs and arms and I cannot get relief from analgesics at all. Today I hope to get an emergency appointment with my GP and ask for steroids to get my inflammation and this incredibly intense nerve pain under control.

My legs are worse - feet cold and clammy, ankles like funny bone pain on fire and all the way up my shins and calves into both knees which are the worst - radiating right up to my buttocks. Hands and arms same but not as severe. I feel as though I'm being gripped by pain and can barely move for it in bed at night. Once I do make myself move the spell breaks a bit although I'm hobbling and stiff for much of the day and getting woken through the night with this awful pain.

Does anyone else have this gripping, imprisoned sensation in arms and legs at night? Anyone else have this with autoimmune disease such as lupus or RA and do you find steroids give relief? I usually resist steroids but I'm really desperate now.