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