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.

Mat,

It is SO hard to find the cause of neuropathy in some cases. They could literally run tests weekly for a couple years and not be finished checking every possibility. You have to have someone that is committed to helping you, and that, my friend, is hard to come by in today's world. They are so overworked, they just don't have the time to give that sort of attention to every patient. They do what they can in the limited amount of time they are given. It's NOT the way it should be...but it's just the way it is.

I had forgotten about a previous thread of yours that I meant to follow-up...until just now seeing this thread. We were talking about vascular issues, if you remember. I really think this should be given some attention. There are several vascular conditions that can cause (directly or indirectly) neuropathy. Vasculitis for one, and there is another autoimmune condition that comes to mind based upon your 'neurological events' that have taken place. This is APS (antiphospholipid syndrome). Have you ever been tested for this? It's just a matter of a few blood tests (nothing costly or rare). The main one is aCl (anticardiolipin). Other tests are Lupus anticoagulant and Beta-2 Glyco-protein 1 antibody (B2GP1). APS is a clotting disorder and I believe you have mentioned some odd 'neurological events' that may have been some sort of TIA for clotting event. APS is tied to several vascular issues that cause neuropathy. So I think it's worth looking into. But back to the vasculitis itself...has anyone looked into this as well?

I have profound proprioception issues, and I can tell you that typical neuropathy medications will NOT help proprioception. Those drugs are designed to alleviate the pain and some will help with the tingling/buzzing/etc...but that is about it. And they DON'T cure the problem...just help make the patient have a better quality of life. Masking the pain may not seem like the thing to do, but when a cause cannot be found, one must consider every option to at least increase their function and meds that give them some manageability to their life.

"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.

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.