Hi Kazzak

I have an auto-immune condition so I did ask specific questions about that being the cause (answer: possibly) but as I had other problems at the same time (medication toxicity & recent appendectomy) and also have osteoarthritis they couldn't give me a definite cause.

They didn't label it idiopathic but only because I got in first and said I wouldn't accept that label. My nerve conduction studies were negative and they didn't suggest any further testing: eg skin biopsy for Small Fiber Neuropathy (public health system = don't spend money unless you have to)

The only good thing to come out of the appt. was that at least it's now on my medical records and if I have to go back into hospital I can insist that they don't give me any medications that are likely to aggravate the PN.

I don't know who your insurer is but I searched "skin biopsy testing for small fiber neuropathy testing in NZ" and came up with the policy requirements for Aetna Health:

http://www.aetna.com/cpb/medical/data/700_799/0774.html

You may be able to get that done here if you meet your insurer's criteria.

Here's a very good article on the use of testing to help with diagnosis of SFN - it may be useful to help your insurer understand the need for the test.

http://practicalneurology.com/2009/10/PN1009_06.php

Just out of curiosity did you have any first-time vaccines within 6 mths prior to developing the PN?

Hey thanks for that I really do appreciate it. No I didn't have any first-time vaccines prior to getting symptoms. I had the usual flu injection but I have had that every year for at least 10 years. I had a minor sore throat but honestly it was not even bad enough to get strepsils for.

The other thing is I went to Europe about 3-4 months before the symptoms began and ran two marathons in two weeks so don't know if I picked up anything from that. But don't even take Panadol usually.

The weird thing is some days I feel really good, but the thing really worrying me at the moment is the pain in my ankles which is often accompanied by burning and a bit of numbness in first three toes. I can run still but wondering if I am doing any damage. I'm a physio and can't seem to reproduce symptoms with range of movement and strength. So I guess that is why I am going to see musculoskeletal/rheumatologist specialist. Apparently he is used to rare things, he has history with SJorgens and stuff like that.

Did you get a skin biopsy? I want to leave no stone unturned....
:o:o

No - I didn't get a skin biopsy - I don't have access to private care. The public hospital neurologist didn't order a biopsy so I don't have a definitive diagnosis of Small Fiber Neuropathy. But but given that pretty much everything else was eliminated and neuropathy can be secondary to auto-immune Addison's Disease (dx 2010) this is the most likely cause.

I just dug out my neuro report and this is what he wrote when I asked about the possibility of SFN: "... unfortunately if this is the case there is little we can do in the way of reversing any processes in place, and symptomatic management is par for the course." Don't you love it when they're all too happy to prescribe drugs with side effects without even confirming a diagnosis.

If you've eliminated other possible diagnosis and can get a skin biopsy then it could help give a definite diagnosis - but won't show the cause. I've not come across any info on the protocol of skin biopsy testing for SFN in NZ (they are routinely done for other conditions but protocols will differ). There has been some discussion on the correct protocol for SFN on NT. Here's a link to one thread:

http://neurotalk.psychcentral.com/sh...iopsy+protocol

You can use the search feature to find more posts on "skin biopsy protocol"

If you decide to get it done privately you may want to ask them about the protocol they will be using - it may affect the results and I'm not sure it's commonly done in NZ for SFN.

It's interesting that you mentioned doing two marathons in Europe before onset - any chance you got a tick bite (Lyme) there that you weren't aware of? I know of someone who recently became ill about a month after coming back from a short trip to Canada - she is now being investigated for Lyme as she went horse-riding while there.

An update
 

Thanks everyone for your help finding a specialist. Well I managed to find one musculoskeletal/rheumatologist specialist and one pain/musculoskeletal specialist in Auckland. Surprisingly I had seen them both before for different reasons.

They were both awesome and generally concerned. Between the two of them I had some manipulations of my neck and thoracic spine mainly and had an injection into my right foot and the symptoms have subsided somewhat especially the pins and needles. I have also been working a bit on some "mindfulness" type techniques to do with pain.

Now I have taken myself off all medication, I have eased back into my running and tennis and am no worse off for it. While I do have numb feet most of the time when playing sport and flareups still the joint pain has eased significantly. I will followup with both of the specialists again next month. But I am so happy