"There is plenty of help from dr google and this dr is free."

I agree with this but please remember that Dr Google has neither scientific nor medical qualifications.

I think that a healthy dose of scepticism is a good idea when interpreting a search - there is a lot of poor-quality information on the Web.

A "second opinion" from a reliable site is a good plan in my view.

Some reliable sites are:

PubMed (http://www.ncbi.nlm.nih.gov/pubmed)

The Linus Pauling Institute (http://lpi.oregonstate.edu/)

The Cochrane Collaboration (http://www.cochrane.org/)

NIH (http://www.nih.gov/)

If it wasn't for the naturopath giving me suggestions for the BURN I've lived with for 5 yrs from femoral nerve damage, I'd still be living with the burn. Bad enough I live with the numb thigh, but the BURN is gone. She gave me 4 suggestions and I chose two and did my research and ordered what I wanted to try.

MAT52, I agree you and others. I was dx with PN about four years ago and I thought it mostly confined to the end of my feet which were tingling and burning. All along I was feeling a tightness in my face and scalp almost like a sunburn. I soon started to feel itching in my right hand. Time went by and the burning in my feet became worse while the other symptoms seemed to level off. I asked my neurologist if he could explain what the cause could be and he said only that it was idiopathic. As I pressed him he said he didn't do tests other than the basic EMG, etc. but he would refer me to the University of Utah Neurology Dept. where they had been doing quite a bit of research on Neuropathy. After 3 visits I quit going. I realize it's a teaching institution, but I was simply a class prop. Each time I went there would be a different student who would come in and do the basic clinical examination followed by the research doctor who would ask them what they found. In every case the answer was the same "progressive idiopathic neuropathy". I was so frustrated I finally said I knew I had progressive idiopathic neuropathy, but the reason for my visits to try to find out why! The students suggested I change my soap or shampoo and they all agreed. Finally I turned to the neurologist who had been the author of so many papers that I had read and he said he didn't know what was causing it, but it "wouldn't kill me". I've never been back.

Over the past two months, my neuropathy that won't kill me has exploded. My legs are fully involved with tingling, burning, and lack of sensation. The same is true of my hands and arms. I continue to have sunburn feelings in my face and scalp, but the symptoms are worse. I'm barely sweating when I run whereas before I'd be dripping. My eyes get real dry. I've always been in excellent health. I've run nearly 30 marathons and countless other races and relays. I've always been very careful with my diet and never went to the doctor's except for injuries. Now I have a serious condition and no one will help. They all say take this pill or that. I know that is the standard treatment, but how is it that were not to give up when the doctors find it so easy to do so.

I try real hard not to be gloomy. I'd much rather be upbeat and optimistic. I retired last April after 32 years as a City Manager. I had great things planned for these years and now this. What's my future look like? Has anyone been down the same road as me with their symptoms. Does this horrible disease ever stop progressing and just level off or is this the beginning of the end. I too am looking for answers.

Thanks Bluesfan. As far as I can gather LDN (there's a good Facebook page for this btw) isn't available in the UK. I was told by my rheumy that I should perhaps ask for a referral to endocrinology if I started getting orthostatic hypotension - but presently I only have hypertension as far as I can tell from testing my own BP with changing posture. I might go and see an endocrinologist privately armed with my blood test results to date. My b12 has just been done and is really healthy at 622 - which is annoying because pernicous anaemia is very treatable.My main thought is that I have a neurological form of Sjogren's Syndrome. I have the dry eyes but not the dry mouth or the antibodies so this hasn't been suggested by my rheumatologist but there's a very good page on on John Hopkins about this. http://www.hopkinssjogrens.org/disea...complications/

So my search continues and I'm almost resigned to becoming number and dizzier until I evaporate into some invisible blob! X

Unfortnately I was unable to tolerate Lyrica - it made me very angry and dizzy. Same for Gaberpentin and Amitiptyline finally gave me severe palpitations after three good years. Cymbalta triggered a whole host of horrible infections for me last year when I came off it. So for me, and many others I believe, these masking drugs aren't an option. Nor are the four DMARDs I've taken and had severe allergic reactions to. Naproxen helps me a lot but after three days my tummy kicks off with GERD so NSAIDs are not a long term option for me.

I'm taking Levothyroxine, Losartan and newly on Amlodopine. I started to swell in the face last week with what I recognised as an allergic reaction after two lots of anaphylaxis from DMARDs. So I was taken off it and restating it today. My face is red and hot but I'm hanging in there as really hate the idea of soaring blood pressure. It's an endless tightrope for many people between medication and symptoms but I'm resolved that for me personally, there has to be a cause for my ever progressing SFN and if this can be established there might also be a treatment I can tolerate. More researchers like yourself are needed and more focus on the nervous system and autoimmunity in my opinion. But I realise I'm bias!

Im so sorry to read your story. It's very like mine in terms of your symptoms. I don't sweat anymore and overheating is scary. I have no suggestions but masses of sympathy. My face (gums, lips, nostrils and left eye) and feet are now very
numb, eyes terribly dry always and scalp very itchy despite no sign of dryness. It is a kind of hell but maybe if we both keep on badgering the health professionals one day we will find the and we will at least then have a name for our suffering. Take care. Mat

My new rheumatologist suggested APS at my first consultation and we were both quite excited that at last something might emerge which fitted perfectly - I even get livido on my legs he observed. But all three blood tests have drawn a blank. Same with Vasculitis - ANCA negative and also Cryoglobulins normal. I did have photos of what he considered to be a vasculitic rash but I think it was just a follicular rash as yet another drug allergy. I'm increasingly convinced I have a neurological type of seronegative Sjogren's having doctor googled my symptoms along with paired Oligloclonal bands. But finding a doctor who will recognise this won't be easy because it's not a very well understood disease here. I'm sure you will have read this page but just in case it's useful to others;

http://www.hopkinssjogrens.org/disea...complications/

Thanks as usual Enbloc for your help. Funnily enough steroids really helped almost straight away with the dizziness more than any other symptom. The oral surgeon felt this was very significant. The dizziness vanished after six months on steroids and only recently returned. The steroids didn't help the neuropathy much although I would flare up each time I dropped a dose. This makes me wonder if the cause is proprioception or perhaps some kind of autoimmune vestibular problem or something MS like?

Jimbo have your doctors ever tested you for inflammation or Sjogren's antibodies Ro and La? Even if these are negative you might have Sjogrens so worth reading this: http://www.hopkinssjogrens.org/disea...complications/

Funny you posted that page....that is MY doctor that wrote that article...Dr. Julius Birnbaum!! He's been my doctor for 8+ years now...saved my life!

Anyway, keep in mind that those labs for APS CAN show negative, then positive, then negative again. If it has been a while since being checked, it might be worth repeating.

Being that the steroids helped CONFIRMS that it is inflammatory based. And I agree with you completely that is it autoimmune. Is any of your doctors even interested in looking for that inflammation that the steroids is helping?? I know there is only so much they can do, but they have right in front of them a treatment that helps, so that should point them at least in the direction of the cause. Backwards from the normal approach, but it still works and has been used in medicine many times.

Is the livedo still there? Both legs? Is it ever on your upper body or arms?

http://www.hopkinssjogrens.org/disea...complications/

Yes thanks for these links. I would like to add my latest favourite link from doctor googling.

Re Caroline's point about acceptance - I would also want to respond by saying that I think that acceptance is all very well if you are older and have a musculoskelital cause for your neuropathy ie arthritis or post operative nerve entrapment or sciatica. But feeling that your small nerve fibres are slowly dying off in droves and you are having autonomic and proprioception issues at a younger age makes it less likely or appropriate that a person can just accept these symptoms or the resulting deterioration surely?

Look at the amount of money that goes into cancer research. If a fraction of this funding went into researching disorders of the peripheral nervous system then we would know much more - especially where it comes to autoimmune forms of neuropathy. If the fundamental cause of the the SFN is discovered then I do firmly believe, from personal experience, that the SFN might be slowed right down or even halted in its tracks or reversed.