MAT52, it is good to read that you got careful attention from the oral surgeon.

One thing that you wrote struck me "Oligoclonal bands" - these are unusually high levels of specific antibodies in serum or CSF.

There are many possible explanations for them which may or may not be linked to your SFN.

It might be an idea if you got a referral to a clinical immunologist who should be able to check out what they may imply in detail with you.

All the best.

Thanks very much Kiwi33. My rheumatologist and old neurologist were both fairly dismissive of the paired O bands saying that they are too non specific to be very useful apart from as a general indication of inflammation - which they already know I have. The high total protein has come down again to top of normal range so it fluctuates as much as my ESR and CRP do. It was the oral surgeon who seemed to take the paired O bands more seriously and said they know something is up - they just don't yet know what so I'm passed from pillar to post because too unspecific.

Re immunology - mine is all negative at present so there's no way is qualify for a referral within the NHS and the top ones here don't do private work.
Mat

Thanks for the update Mat.

It's good that you finally found a doctor who listened, understood and believed what you were talking about - sorry it had to be an oral surgeon who probably won't be able to provide any necessary treatment. Here's hoping at least that his report is taken seriously by the other doctors you're referred to. Is he going to send you (or your GP) a copy of the report?

All the best for progress in your continuing search.

Thanks Bluesfan. Yes you grasp it all so well as usual - there is probably not going to be any positive outcome for me from the oral surgeon's supportive consultation - especially because I have no jaw or mouth related symptoms presently beyond the small fibre ones. But somehow his support encouraged me not to give up my quest for answers or resign myself to the SFN necessarily being present and untreatable for the rest of my days. With time this boost in confidence diminishes but he did say he woukd write to my GP. I have to register with another GP practice in a month's time because we are relocating permanently soon so I may not be able to acces his letter easily though but we will see.

If need be perhaps he would provide you with a copy of the letter he sent your GP? Or if it's part of your medical file a release of information form could do the trick. Maybe worth a try.

Have you explored this:

http://www.rheumatology.org/I-Am-A/P...gia-Rheumatica

High inflammatory markers that may change, and prompt response to steroids...suggests this IMO.

Thank-you for this suggestion MrsD. No one has ever suggested PMR to me although my rheumy has considered other types of Vasculitis such as Behcets. If I get any vasculitic rashes again he wants to see me urgently and get my cryoglobulin retested. Also I was kept in hospital in May because of the possibility of my facial neuropathy being GCA - but this was later ruled out. I only have widespread SFN - not the severe muscle pain of PMR.