Hi there

Starting to get very frustrated, appreciate any help with my neuropathy. Have a sensory neuropathy but now have achy bone pain and GP and neurologist have said it is probably virus related or idiopathic. With GP saying if tests come back normal probably fibromyalgia even though I have absolutely none of the symptoms of that. Had this 9 months and came on relatively quickly.

Had four sets of comprehensive bloods absolutely nothing abnormal rheumatoid, ANA, vitamins, etc. Only borderline test was for Lyme disease but have not been exposed to it as live in NZ. On voltaren 100mg once per day which has made a little bit of difference. Medial ankle pain is getting worse both sides but cannot reproduce it functionally. The neurologist I have been seeing is just about to retire and has discharged me. Nerve conduction studies normal.

Would just like to get comprehensive testing and make sure there is no reason unturned. Prepared to travel if needed, I just want to see if I can halt its progression but Auckland and NZ seems too small to have this expertise. Very frustrated!! I would really appreciate it if you could steer me towards an expert in maybe acute or chronic sensory neuropathy....

hi there. have you been referred to the Auckland regional pain clinic? My experience in New Zealand is that for neuropathy you'll be referred to a pain specialist. have you actually seen one? I have been to the Auckland clinic and have pretty mixed feelings about my experience there but it could be worth a go. I do think pain care here is not very comprehensive and the general attitude seems to be learn to live with it. Not a philosophy I share. I also think that there is a very conservative attitude re medication. Anyway good luck. Hope you can find what are looking for.

Kazzak21, it is a while since I lived in NZ but you could check out Healthshare (https://www.healthshare.com.au/).

It is an Australian site which you can search for all kinds of health professionals, including neurologists who might be able to help you.

Pain responding to NSAID is a good sign, so is clean EMG
Most of the time neuro pain won't respond to regular painkillers
I hope you'll find a good pain clinic, they may be better help than neurologist, good luck!

Hi Kazzak21

I'm guessing you're willing to go private in your search for a neurologist so you may find some one on this website who can help.

http://2cu.co.nz/listings/find/neurologists

It may help to filter out those whose areas of specialty are less likely to include neuropathy. eg geriatricians will be focused on neurological conditions in the elderly. Also look for any that also practice in the Auckland DHB public health system - from your posts I take it you've already been there - done that - so they're not likely to offer anything further. Maybe look for someone with overseas experience/training in neuromuscular conditions etc.

I'm in the Waikato area and have only had personal experience of the Waikato Hosp. Neurology Dept. After a 6 mth wait for an appt. I got basically the same result as you. - so again unless you can go private things aren't much better down here in the public system.

All the best for your search and finding some help.

Hi there. Thanks for your reply. I haven't gone down the pain clinic line yet. I work in the healthcare field so will probably try a pain specialist first (doctor). The pain clinic for some of my patients has been either a really great or a not so great experience. Did you see a neurologist in Auckland first?

Thanks for that, yes if I don't get any answers over here I will try and go to Australia. Sydney or Melbourne would probably be best. I have decided to try a musculoskeletal/rheumatoid specialist just to try and rule that out. Apparently this doctor has experience with unusual presentations. Is there anyone in Sydney you would recommend? Are we allowed to discuss individuals. I really appreciate the reply.

Thanks for your reply, yes I was a bit annoyed with not getting very far with finding out anything, it seems if the results are negative it is determined idiopathic. I am fortunate to be in a position to have medical insurance and I am going to try a musculoskeletal specialist and rheumatologist just to rule that out. The doctor I am going to does both. Have an appointment next Friday. Appreciate your reply, did you manage to find any answers?

Hi there. Thanks for your reply, hadn't really thought about that. Yes I think the antinflammatries have made a bit of a difference. I am off to see a musculoskeletal/rheumatologist doctor to rule these out and will try a pain clinic if that doesn't work. Trying to rule out every possibility if that makes sense. Appreciate your help!

Will definitely use this site if have no luck over here. Appreciate your help!