I did post a while ago to say I'd spent a week in hospital on IV antibiotics because of a suspect abdominal sepsis - possibly relating to my gallbladder. My CRP was up at 150 and ESR in mid 60s. The surgeon thought that I had a UTI with sepsis and my GPs were convinced all my issues related to my gallstones despite an ultrasound scan showing nothing untoward going on in or around my longstanding gallstones.

I was two weeks into taking Azathioprine/ Imuran when the abdominal issues kicked off. I came off it while in hospital and then tried, after a two week break to restart last Wednesday. I had a strong instinct that it was the culprit for the abdominal pain even though my pancreas and liver tests showed nothing untoward. I am booked in for a Cholecystectomy (gallbladder removal by keyhole surgery) in early July.

So I ended up with such terrible vomiting and pain an hour after taking the
Imuran last week that the doctor had to come to my house and inject diamorphine and anti emetic in the bottom!

Even then my doctors didn't want to blame Imuran as my monitoring bloods had been okay and my CRP was down to 6.7 but ESR slowly continuing to rise so RA/ inflammatory process was out of control. The peripheral neuropathy and jaw pain were the worst they have ever been to date and stomach issues had eased.

All the while I felt exhausted and dizzy to the point of unable to walk downstairs let alone work or help my son with exam preps or my husband with cooking or housework.

So I agreed with some trepidation to take Imuran again the next day and within about four hours was doubled up with the original pain. No vomiting this time. All night my entire body was gripped with one sort of pain or another - only the top of my head was exempt!

Next day the stomach pain eased and I decided this was the end for me and Imuran, whatever the doctors said, so I took my prescribed cocktail of Tramadol, Paracetamol, Ranitidine and newly reintroduced Codeine and went to sleep. When I woke I felt fuzzy and the side of my face had gone numb and my entire left side was weak to the point of near paralysed. I thought I might be having a stroke so the doctor was called once more.

He agreed I should stay off Imuran and felt I might be suffering from understandable anxiety with these multiple symptoms but had me re-admitted to hospital - this time for a possible stroke so I was under a medical consultant rather than the surgeon. And this is a tiny community hospital in a remote part of Scotland so the chances of finding anyone to unravel my complex case wasn't very good.

But I hit the jackpot at last and was seen by a consultant nephrologist who really knew her stuff. She kept me in under watchful gaze for five nights having immediately recognised that this wasn't a stroke but something far more strange. My CRP was up at 160 and my ESR had risen into the 70s and yet no sign of infection or visible inflammation at all - just a moderately raised white blood cell count and platelets and amylase and blood in urine - which they felt could be a mixture my reaction to Imuran and constipation from Codeine. I was put on proper doses of laxative for this. By Monday morning the conclusion she and another locum consultant came to was that the gallbladder, Imuran, constipation etc were all issues that had distracted from the main problem - which is my autoimmunity is presently soaring, unchecked.

So they all feel that my appointments with the neurologist and afterwards with the Maxillofacial surgeon next week are going to be very important in establishing whether the disease process is attacking my nerves and blood vessels - in particular my face/ nose/ mouth.

They phoned my rheumatologist to explain that my CRP had come back down to 17 without any assistance from antibiotics, steroids, NSAIDs or immunosuppressants over a long weekend and therefore the neuropathic pain in my face/ jaw and peripheries must all be part of the inflammatory process because there is no sign of infection at all.

The nephrologist also took my anca bloods for possible vasculitis but said if negative it's unlikely candidate because anca negative vasculitis almost always attacks the kidneys first and foremost and mine are fine currently. My rheumatologist didn't mention steroids or when he might see me again to her but agreed that the Maxillofacial surgeon and neurologist were probably key to next move.

Meanwhile these consultants said they thought I should be having a temple arterial biopsy and told me to phone emergency number if I have any visual disturbances - and this doesn't include the dizziness.

So now I'm home armed with Dihydrocodeine and lots of laxative and the fatigue has lessened a tiny bit, the laxatives have worked their magic at last but jaw still weird and painful and all the peripheral nerve pain rages on in my legs and arms as it's done almost constantly for over two years.

So what to say at this routine neuropathy review next week? The neurologist started out in November saying he thought I had a severe and progressive small fibre neuropathy and then, after extensive nerve conduction tests, brain MRI and serum blood tests for Lyme, immunoglobulin etc and a lumbar puncture in January - and more recently a skin biopsy from my calves, he wrote saying he could find nothing wrong. So he changed his mind from progressive immune mediated SFSN to a mild idiopathic small fiber neuropathy - and nothing he felt that would warrant immune suppression. Just treat the symptoms with family of drugs I can't tolerate such as Gaberpentin and Cymbalta. End of.

What questions should I be asking of him now do people suggest? Has anything really changed? I have tried four disease modifying drugs and under the NHS I won't qualify for big gun very expensive drugs unless I have swollen joints again. But surely he can't dispute that the pain in my nerves around my body corresponds with the high levels of systemic inflammation now?

The worst symptom of all has been immense fatigue and this slight dizziness - the pain I'm used to now. It grips me in the night like a force from hell - and sort of holds me tight so I can barely move. But when I do move it is less awful - so the stillness seems to make it worse. It is definitely in my nerves and blood vessels rather than in my joints now.

Sorry this is so very long but I know that some of you have followed my story and would be very grateful for your advice on what to focus on with the neurologist under these circumstances.