If no tests, apart from pin prick nerve conduction, have given a diagnosis of SFN yet and this includes Lumbar Puncture, Skin Biopsy from each calf, electronic nerve conduction (not including a heat one), MRI of brain and neck and many serum bloods including Cryoglobulin and Immunoglobulin - does this mean that my parasthesia in all four limbs and face - is not small fiber sensory neuropathy? Or is this regarded as idiopathic SFN.

An oral surgeon told me last week that the numbness and tingle in my face and teeth/ gums were not trigeminal neuralgia as my GP had said it must be - but a parasthesia of the small nerve fibers - same as I have everywhere else. This didn't surprise me at all because it's how it feels. It is in my tongue now too and I feel it is spreading quite fast - more pronounced on the left hand side of my face. I feel as if I've had local anaesthetic all over the place and it's only partially thawed out. The dentist said it was a neurological problem and he was going to write to my neuro to explain his findings.

I have also gone from not sweating at all, no matter how much i exert, to having these flushes/ sweats/ fevers. I am five years post menopausal and never suffered flushes or sweats and it is quite embarrassing because my hair will suddenly be soaked through. Everyone assumes it is the menopause but I am sure it isn't. Also my dizziness of over a year has worsened and I'm always bumping into things, have to be very careful when I rise from sitting or lying and find it hard to turn my head without the sensation of falling. My heart is very arrhythmic just now too.

The dentist told me not to take any of the anti-convulsant or anti-depressant drugs commonly prescribed for nerve pain because he feels it is important nothing masks this parasthesia. He said my neurologist should probably check the nerves that run up the back of my head for lesions or a ganglion or granuloma (I think this is what he called it?). Does anyone know how this part of the head would be tested I wonder? My GP felt it unlikely that they would find anything because the parasthesia is so diffuse. I'm getting a little desperate because my rheumatologist has written to say that he and my neuro agree that I should not have any more immunosuppressents for the time being because I'm so allergic that the risks outweigh the potential benefits for me.

He advised me to come of Prednisolone slowly after my gallbladder op on Tuesday - no rush at all just slowly taper according to my symptoms. I'm slightly panicking because apart from the frantic tingle and numbness around the place the excruciating nerve pain has lessened significantly in my feet, ankles, legs and hands and arms and my face is uncomfortable and weird rather than swollen. He feels that we have to keep an open mind but as he diagnosed me four years ago with seronegative RA on the basis of synovitis and a fluctuating ESR - he is sticking to this for the time being as there is no evidence of any other connective tissue disease overlapping or replacing his original diagnosis yet.

I know many of you have read my posts about my strange form of RA - the mystery continues but it would be very helpful to know what people think about this nerve at the back of my head being investigated and how this might be done?

A couple of women I know that are both post-menopausal have these sweatdowns. One lady has diabetes and is quite heavy. The other lady is pre-diabetic but has fibromyalgia plus psoriatic arthritis. Neither can pot on make-up as it is a losing battle. My comment is that I think that you are more toward the normal now than you were before. Good Luck, Ken in Texas.

I guess you are right Ken although not sweating had its advantages. Until I did a Zumba class and nearly passed out when my body couldn't cool itself. Interestingly it was the pneumonia in March that seemed to change everything so nose bleeds and eye dryness eased/ stopped and I started sweating again prolifically! I don't have diabetes and I'm only a little overweight and don't have Fibro. I guess it's all swings and roundabouts.

I've also lost my sense of smell now completely over a few years - which I feel must be neurological. Can't smell roses, sea air, rosemary with garlic etc but on the other hand nor can I smell my dogs' farts - you win some, you lose some!

I think your oral surgeon is pretty bright. I have the same problem with my face around my left eye, jaw, mouth, throat and tongue. The last few weeks it has moved into my nasal sinus area. Boy does this hurt! You not alone in having these awful symptoms. Your problem can certainly be caused by SFN. You've already had a MRI of your spine, correct? I'm not sure what your oral surgeon means by checking the ganglia....

[QUOTE=madisongrrl;1152797]I think your oral surgeon is pretty bright. I have the same problem with my face around my left eye, jaw, mouth, throat and tongue. The last few weeks it has moved into my nasal sinus area. Boy does this hurt! You not alone in having these awful symptoms. Your problem can certainly be caused by SFN. You've already had a MRI of your spine, correct? I'm not sure what your oral surgeon means by checking the ganglia....[/QUOTE

Thanks. I'm lucky in that I'm not in much pain in my face as you describe - more pins and needles and a slightly numb sensation. All the pain I have is in my feet and up into my legs, same with hands and arms and has been for 2 or more years now. It's definitely settled down a lot since I went on steroids. I had an MRI of brain and cervical spine (neck).

The oral surgeon has a brilliant reputation and referred to nerves behind the jaw right at the back of the head. But he said there's no sign of swelling in my mouth from lumps - just thought it should be checked out in order to rule it out as culprit he said?

One would think with all your negative tests, that SFN would be excluded...but I DON'T think this is always the case. One of the things often not looked at during biopsy is the morphology, condition of the fibers. Just because you have normal fiber density, doesn't mean that the fibers them selves are in good condition and damage fibers can (and will) cause symptoms of SFN. Sadly, many pathologists don't check the condition of fibers, especially once they see density is normal. My first biopsy at Johns Hopkins showed exactly this...normal density yet segmented, tortuous, and swollen fibers, along with very patchy distribution. A year later another biopsy was done and the condition was worse. Let me also add that your symptoms are relatively new and therefore, you may not have noticeable findings (in regards to density) at this early stage. Did they give you the percentile of density? This is important as you may be on the low end (yet still in normal range) which would explain your symptoms at early stage.

So other then finding a pathologist to review your samples (which are typically saved/preserved) and assess the condition, I think you might also consider an MRI of the spine (thoracic and lumbar). Compression issues are a very common cause of neuropathy and it doesn't appear you have had this ruled out yet in the most common area that it occurs.

As for the face, is it possible you have candida? You have had numerous antibiotics, if I remember correctly (from the pneumonia) and candida is a very common cause of your facial symptoms, even on the tongue.

Otherwise, I still think the SVID could possibly be causing your facial symptoms...especially since I have experienced it myself and know those very findings on your MRI (just like mine) can cause those same symptoms. Those small nerve fibers in the face are greatly effected by those tiny vessels being ischemic...and you don't have to have lesions. At least it shouldn't be ruled out as the cause. of course, it could be an extension of the neuropathy, but I think it would be a bit more odd to see this much progression to the face when you don't even have positive findings on biopsy anywhere else (yet---but that may change in time). A consult with a vascular doctor would be helpful in regards to your facial issues.

Go slow on the Prednisone taper...it is not going to be fun coming off it and can take some time. Patience and going at your own pace is best.

Definitely not candida Enbloc. Nothing oral wrong at all in fact I'm told apart from a class 2 oblation which would only account for a bit of mild TMJ - and this is from three dentists, an oral surgeon and my GP - who all looked for oral thrush straight away as the most obvious candidate. It's all phantom trouble as it were and goes up into my nose, left cheek and eye. It feels tight and swollen but really isn't to the naked eye at all.

I'm not that confident in the skin biopsy results but will get them printed off as you suggest because I've only been told by go and neuro that they were fine - don't have the break down I can study or investigate. Good idea to get it printed off though you are right. My lack of confidence is mainly because my GP conducted it himself to save money and the hassle of flights when I was pretty unwell and also to notch up points for his professional practice of course. So he took both samples from my calves but I thought this was odd because surely he should have taken two on each leg to measure length dependency? Also I don't know quite where the results then went or who analysed these samples. The neurologist did say that something in the results had shown up that could mean either infection or autoimmunity. I thought at the time he explained this that he was referring to my blood results - but looking at these I think it must have been the skin biopsy actually. I'm not sure that he would otherwise have said he wanted to speak to my rheumatologist about me.

The area we are set to move to in mid October has a multidisciplinary approach to both rheumatology and neurology and a nearby large hospital they can refer patients to for rare diseases such as Scleroderma and some types of Vasculitis. My rheumatologist has mentioned Scleroderma as an often slowly evolving connective tissue disease which might possibly explain my SFN symptoms and many others such as tight mouth and circulation problems.

There is no real evidence of this yet but he said it's very difficult to diagnose in the early stages and with my signs and symptoms to date, including a large irregular cyst on one kidney - he would advise my new team to watch for this particular disease in my case.

I don't think lumbar/ spinal compression would account for the very diffuse nature of my parasthesia - at least that's what the neurologist told me. I do have arthritis in my neck and my physio and the doctor conducting my disastrous lumbar puncture back in January have both confirmed that I have wear and tear arthritis in my L4 and L5. But not severe enough to cause the problems I'm having in my peripheries they felt - as hands wouldn't be affected in this way. I think they all feel it's systemic rather than mechanical with me. I would like to have an MRI of my pituitary gland, my thyroid and also of my lower back but MRIs are terribly expensive and I can't afford to pay for these myself - and NHS won't offer them unless they feel there is sufficient reason. So there's air of guesswork going on in my case I feel!

I'm not sure that this is all that new really. My parasthesia symptoms started before the RA about six years ago but I dismissed it as probably menopausal stuff - hear surges in my wrists and repetive strain type pain in one arm. The burning soles started with the bilateral joint pain and flared with the polyarthritis so I assumed all were part of the RA for ages. Then the RA symptoms died away as methotrexate kicked in but when I had to come off tgis for intolerance reasons the pins and needles became my main symptom and this was three years ago now. They have never gone and have progressed to burning pain and icy cold sensations and a feeling as though I've wet myself often - so right up into my groin and shoulders and now my face. No real joint pain for a long time now - maybe 18 months. Is this still counted as a new-ish symptom?

The Prednisolone helps only with the pain, throbbing and dizziness - it doesn't calm the parasthesia/ icy toes, wet numb feeling in my legs during the days or the pins and needles in my face. Although I guess it could all be relative and worsen significantly as I taper off.

Thanks for your help anyway. Perhaps the anaesthetist will be able to tell me more when my heart and oxygen levels have been monitored closely while I'm under general anaesthetic on Tuesday for my gallbladder surgery? They do know about my rogue version of RA with SFN and the anaesthetist did seem curious.

Or maybe even the removal (and analisys of tissue) of my gallbladder might reveal something useful - or all my symptoms miraculously depart with this long defunct little organ and its inhabitants? Here's hoping but not expecting! Thanks for explaining more about the small nerve fibers - I will report back when I get the print outs of skin biopsy anyhow. Mat

Not able to smell the bad air, haha. I remember another member that has some of your sensory symptoms and he ( in his own mind ) ties the loss to a particular incident. You might search for posts from " Neuroproblem". Good Luck, Ken in Texas.

That is interesting Ken (as well as quite funny!). The trouble is this problem crept up on me so I have no idea when it started - or even when I properly noticed. I was on injections of methotrexate with Hydroxichloraquine tablets for two years so I decided it must be drug related but it's never come back. I think it's a bit of a coincidence that I also have numbness and parasthesia and dizziness and the lack of smell (and taste too to a lesser extent). But I'm sort of hoping the removal of my gallstone with longstanding stones might help. They say that autoimmune diseases are usually connected closely with the gut so this doesn't seem like an impossible idea. Mat x