I've bee feeling as if doors are closing for answers but I'm unable to accept that this progressive SFN is ideopathic. Or rather I don't accept the notion of ideopathic as acceptable. However the other day I went to see an oral surgeon - my third to date - just because my GP had referred me with what he believed to be Fibromyalgia/ burning mouth syndrome. I wasn't expecting anything at all having had the traces of blood in my pee dismissed the previous week by a urologist.

This chap was older and obviously a very experienced oral surgeon. He had read the notes from my neurology reports and asked me to describe my symptoms. Acute pins and needles in arms, legs, scalp and gums with increasing numbness and autonomic symptoms such as no sweating, lack of sense of smell and taste, disequilibrium with problems keeping my balance or processing visual clues such as changes in floor surfaces and changes in lighting and moving objects. I explained that I think this is because I'm losing sensation in my feet and legs. I would still feel something if it hit my legs but subtly and slowly I am becoming numb.

He didn't bother examining my mouth but explained that the issues in my mouth and face are part of the neuropathy that is affecting the rest of me. He said this is not Fibromyalgia or ME or any type of chronic pain syndrome and my mouth and nose are affected by small fibre neuropathy rather than burning mouth syndrome. He told me that it is clear, from my fluctuating inflammatory markers that I have a rare type of immune mediated neuropathy. He was very kind and somehow reassuring and I felt believed for the first time in a while. He even knew what paired Oligloclonal bands were whereas my rheumatologist acknowledged this wasn't within his area of knowledge. He will write to my rheumatologist and neurologist to explain what he has told me regarding my mouth.

So I feel more positive that one day someone will diagnose and treat this unpleasant tingle, ache, burn, freeze, ant crawling, partially anaesthetised me. Here's hoping it doesn't come too late. The SFN is absolutely terrible tonight after a four day period of relative calm.

Well, it's about time that someone listened and understood what you have been going through. I only hope that his notes to the rheumy will open a door for more exploration as to the root of this problem...and then proper treatment.

As for your feet, and difficulty with flooring, surfaces etc. Has anyone done a check on your proprioception? The test is simple and would include the doctor having you close your eyes while he moved a toe up or down...and you have to tell him which direction it moved? Same for fingers. If you are unable to get these correct, he would move up and do the same for ankle and wrists. Has anyone done this test? It may be that your proprioception is affected, which definitely causes problems with balance and surface changes. It's basically not being able to tell where your feet are in space...so in order to not fall, you HAVE to look at them while walking. just curious if this is playing a role in your current situation. It is yet another aspect of SFN.

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 Enbloc. Yes I've had this test done by both my old GPs and my neurologist but not for some time - over a year ago perhaps. My balance issues are very subtle and were the first thing to disappear on a high dose of oral steroids. Each time I dropped a dose they would return to plague me. Unruk one hospital admission for a stroke-like turn - retrospectively classed as a function an neurological episode (trauma) - last August - a hospital doctor told me I was tapering too quickly and boosted my dosage again. Then it just went away.

Now I'm back off steroids and it's not fully returned but I will misjudge surfaces, fear falling rather than actually fall, missinterpret visual cues etc and end up clutching walls or touching hard surfaces close by for reassurance. This time last year I felt I had to use a walking stick so I've come on now as I don't even know where mine is! Very interesting to learn about proprioception and SFN - thank-you now I know what this test is looking for.

My previous GP used to ask me to stand up facing him, close my eyes and cross my feet/ legs over and hold his arms out to prevent me falling. I would immediately start falling to one side (the right). He said this meant it was vestibular but knowing my drug allergies he didn't bother with medication and never referred to an ENT specialist. When I asked one of the new GPs to refer me he just said no and referred me to the oral surgeon instead but at the time I wasn't dizzy because it had settled.

The oral surgeon seemed to grasp what I was describing (I really wasn't expecting him to be remotely interested!) and was very sympathetic. His gait was quite similar to mine and his eye twitched a lot like mine does and I wondered if he has similar issues himself. It was very heartening to be understood and for someone to spell out that my symptoms are believed and taken seriously and are almost certainly neurological in origin. They just don't know what it is yet but some form of rare autoimmune neuropathy he felt. I have rather lost faith in doctors reporting my symptoms to their colleagues as they explain it to me though. I've had a professor of connective tissue disease tell me that if he paid heed to autoabtibodies he'd be out of a job - and that I have certain autoimmunity but no reference to this in his clinical letter. Same for my neurologist who explained the stroke-like occurrences brilliantly to me and then described them in his letter in a way that makes me sound like a hysterical fruit cake!

Mat X

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.