Instead of offering us drugs such as Gaberpentin - which will only ever mask pain at best - why isn't more effort made to establish the causes of all types of neuropathy? Why can't they try IViG on someone like me just to see if it helps as a way of establishing the cause and slowing down the deterioration of nerve damage?

I'm irritated because my latest rheumatology letter states that he is suggesting I try Norotriptyline and Pregabalin but I'm declining. The implication is that it can't be that painful after all. But I've told him that, after several years of severe burning pain my main symptom now is widespread pins and needles with numbness and this spatial issue/ disorientation. If my problem is with my proprioception from lack of sensation (and my diagnosis of SFN is a clinicical one from a neurologist) then how on earth would drugs such as these help me? They aren't designed to modify the neuropathy - only to reduce the pain. My pain has largely burnt out now and I'm left with loss of sensation and muscle weakness/ poor grip, inability to regulate temperature, smell or sweat and an unpleasant taste the whole time. Plus I'm exhausted from having to think extra hard about where I'm walking and not losing my balance if I turn too fast or am crossing roads or faced with changes in floor patterns. How on earth would Pregabalin or Norotryptyline help with this?

The two oral surgeons/ maxilofacial doctors I've seen have both advised me to avoid these type of medications so I will. But I read of friends with OA and RA being offered laser therapy for tendinitis and yet this kind of therapy is never suggested to me for nerve pain/ numbness/ widespread tingle and burn/chill. I just get fed up with doctors shrugging and telling me they will probably never find the cause now so I need to accept that these nerve pain drugs are all they can offer me.

I've tried three already with disastrous consequences. I wish there was some kind of anti static device one could climb into and climb out static free and able to feel steady again.

I have been reading your posts and really sorry to hear what you are going through. I have been in the same boat, refused to take Amitrityline for the same reasons. Luckily after a long and frustrating struggle I found a neurologist who was ready to help me get immunological treatment, although I don't have a specific autoimmune diagnosis.
I really hope you would find a better doctor.

Thanks so much stillHoping. I'm trying not to expect too much but I should be seeing a neurologist in a larger hospital with a good reputation and better equipped to test and more acquainted with rare types of neuropathy. Fingers crossed for me and glad you've got your neurologist fighting your corner at last. I still have a 10 week wait to see one as this is the NHS. X

Good luck, I hope he would be worth waiting for!

Hi Mat52

I understand your frustration. Like you I'm left with no specifically diagnosed cause for my neuropathy but from a process of elimination the most likely one is autoimmune secondary to Addison's Disease. The neuro didn't label it idiopathic - but only because I made it clear before he said it that I wasn't going to accept that label.

I was offered gabapentin but refused (for now at least) - I have reactions to so many meds and like you feel it only masks the pain. Saving it for later if the pain gets really bad. I'm guessing the reason no one even mentioned IVIG to me is that it's extremely expensive and probably rationed (I'm also under a public health system). Knowing my options are limited (I can't take most pain relievers due to them interacting with the essential Addison's meds), I'm starting to look at alternatives - particularly LDN -Low Dose Naltrexone. I'm just starting my research and have a ways to go - including getting it approved by my endocrinologist - but from what I've read so far it looks possible - it's not a cure for PN but a modulator of the immune system which may provide 20-30% relief - that I'd take.

I may already have told you in earlier posts that it is likely your PN is caused by the Hashimoto's - it is very common that even though a primary auto-immune condition is being well managed the secondary condition caused by it (ie PN) does not resolve.

Sorry this doesn't give much hope but stay determined and persevere with the system and hopefully a way to manage your symptoms will be found.

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

Yes the elusive cause of chronic disease, now that's a tricky one. I'm a medical researcher and I can tell you the body is so complex compared with our understanding. It's good to always look for the cause, but so many times, we just mask or pacify the symptoms. I can tell you for sure I'm glad I started Lyrica because it has helped my sleep and so pain too. These drugs naproxen and Lyrica, they keep life bearable for me, I am happy with that.

That's what is great about this forum..the doctors don't have time and don't recommend the needed and helpful supplements anyway. Their job is to write scripts...truth.

Same with thyroid help, they don't take time and just go by numbers....we are not numbers, we are symptoms...I've been thru years on the thyroid issue and I'm done...took a lot of my work and support groups to get the help I needed for years.

Everyone has to learn to work on themselves to save themselves and get as healthy as they can. There is plenty of help from dr google and this dr is free. And friends are free too, they want to help us.

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!

they cant try harder, because NEUROPathy have so many causes, and some of them are unknown, so there is no base where they can start. Something like a common cause of pn, can be seen as idiopathic because of unusual presentation. so in the end they will randomly throw medication at you, or in some cases they will say you are making it up or looking for drugs to get "high".
you seem to also have autonomic neuropathy. those drugs appears to only mask the pain, not suppress like anti-inflammatory. Ivig is very expensive, which is why there is hesitency, and also it might not work for everyone with pn. it is because neuropathy has so many causes, it hard to point it at "diabetes, sogrens, or some wierd diseases