We are to move to the central belt of the Scottish mainland soon from our island home of 26 years.

Because of various illnesses, allergies and intolerances to medications and the sheer quantity of different powerful medications I've taken this year - and probably a measure of ill fortune - I've not got very far with my quest to find the cause of my idiopathic nerve pain. I'm to start with a new rheumatologist in three weeks time - one who comes highly recommended with a special interest in the more rare forms of rheumatic disease such as Vasculitis, Lupus, Scleroderma etc. My present consultant has spoken to him about me and will pass my notes to him next week.

Meanwhile I see my current neurologist again in the neuro ward of the big hospital on Tuesday. He has always impressed me with his thoroughness and willingness to run tests - within reason.

As some of you may recall I had a lumbar puncture in January with serum blood tests and MRI of brain and neck. Only paired Olygoclonal bands showed up - and indication of a systemic process occurring he wrote. Since then I've had three stroke like events that my GP and the hospital consultant (a nephrologist) think may have been triggered by medications, pain and stress in the form of hemiplegic/aura migraine (spelt?). On Tuesday I am to have an EEG and an ultrasound Doppler Carotid scan to rule out strokes, seizures etc. My neurologist is an expert in headaches and migraines so this will be a useful point of discussion I hope. He will probably refer me on to his colleague then - who works in the same hospital as my new rheumatologist so they will hopefully work together on my case. I'm feeling cautiously optimistic that this is going to be a very positive move for me.

So my questions of the week are these: I am told vasculitis and seronegative Lupus are very unlikely overlaps for me because of lack of organ involvement to date. And yet I have a large irregular cyst on my left kidney and each of my stroke-like turns has affected my left hand side with temporary paralysis. I suffered from pneumonia in one lung in March and soon after was hospitalised with what the surgeon described and treated as a UTI sepsis. Personally I think it was Pancreatitis caused by Imuran but onu notes it is a UTI sepsis. I also had my gallbladder removed a month ago, had a severely infected keyhole wound afterwards which took me back onto hospital for more IV antibiotics - my seventh course this year. Since then my LFTs have been soaring - finally coming down significantly but when I get my blood tests back they are often raised even when the only drug I'm currently on is a low dose of Prednisolone - which can cause liver function issues too I'm aware.

So I'm querying whether I should accept this idea that I have no organ involvement to date really?

Next thing that's been a bit odd is my that my wounds this year - including some grazes - have over granulised so I have strawberry blister like lumps spring up as the wound heals or has already healed. This is new for me but the wound in my navel is finally healing up well so I mustn't complain - just these bizarre red strawberries make me wonder if they could relate to everything else somehow - especially possible vasculitis.

Then there's the steroid Prednisolone. I've been on it since June 5th - tapering down to 5mg where my GP believes I should now stop at a maintenance dose. The only pains I suffer these days are peripheral nerve pain that stretches up into my thighs - particularly severe in feet and ankles - and in my hands and wrists. And yet my sed rate continued to fluctuate according to the level of pain and steroid dosage so my doctors feel that it is likely that the small fibre neuropathy (unproven) is related to inflammation levels for me. I'm trying to taper off Pred entirely now - reducing by 1mg every 3 weeks according to my GP. Currently down to 4.5mg and this tiny reduction has triggered a flare up in SFN symptoms - including in my gums - as well as dizziness and fatigue.

Also I've observed that the neuropathy/ parasthesia almost disappears whenever I'm taking these double antibiotics and returns with a vengeance when I complete the courses. Three times this has happened. Coincidence? Mind you the GI side effects have been so bad each time that my brain not be able to compute acute symptoms and chronic ones?

Where to start with a new rheumatologist and neurologist eh?!

Hi Mat52

I'd been wondering how you were getting on since your last post-op thread. Thanks for the summary of your past year - it fills in the gaps of everything that you've been through - and are still.

It must be heart-wrenching to leave your island home and moving itself is a stressful situation. Please take care of yourself during this time and get as much rest as possible. I hope you have enough help with the move itself so that it doesn't add too much to your worries.

Maybe the place to start with the new rheumatologist and neurologist is to first ask them how much do they know about your situation - this will tell you - A. if they've read your notes thoroughly and B. if something may be missed out of the notes or referrals (I've had this happen more than once). Then maybe ask them if they have any new ideas about the so far unexplained symptoms. Re accepting no organ involvement - keep questioning - sometimes organ involvement can have no overt symptoms (especially the liver) until significant damage has occurred.

All the best for your new home and progress with your health. Will be thinking of you and let us know (when you can) how you're doing.

Thanks so much Bluesfan - sounds like a good way to approach the new doctors I agree - will try this approach and let you know how I get on. Mat x