Hi, thanks for your response. I will keep a diary ... things change day to day hour to hour sometimes so it it would be really valuable. Good idea!
My doctor has me on a low dose Gabapentin at the moment - its not doing much so far but I have been building up the dose for a week so fingers crossed it will start working soon. I was on a high dose anti inflamatory and Omeprazole for a couple of months but have stopped taking that now, they also prescribed Diazepam and Pethadine at times when I have been really struggling.
Pain is a real issue for me, I am allergic to a huge list of pain medications so have to take any new medication really slow to start with just in case. I have a pain meditation app on my phone which helps me get to sleep!
I had a new symptoms last night ... the bottom of my right leg and foot felt FREEZING COLD painfully so, still the same this morning.
The Neurologist I will eventually see is a specialist in periferal nerve issues so hopefully will be aware of the conditions you mentioned. Our NHS allows us some choice in who we see - I will do some research to make sure he is the best person for the job!
Will make sure I get my B12 checked - I hadn't heard of that before and pretty sure they didnt test that in my bloods last week.

Thank you!

First off, a lot, if not most of us here understand these sensations and pain. It can be devastating and all consuming.
Its important not to panic. I too, have it widespread and doctors are sick of seeing me. Its been 3 years, and I'm still alive. Sometimes the sensations make us feel like were more sick than we are. Keep the term nerve conduction study in mind. Its what got me my diagnosis.
Try to keep yourself occupied and take good care of your mind and body . That app sounds great! There are a number of meds to try, from anti depressants like Cymbalta and Amytiptaline, to narcotics if required. Cold compresses help me when all else fails. Just don't overdo it. Heat tends to make the nerves more active, so its not really advised.
If its any comfort, here in Ottawa Canada, our wait time to see any neurologist is at minimum 9 months. Start with research, and keep that journal , as the wonderful Ginnie mentioned.
It probably wouldn't hurt to start on some methylcobalabin (B12), as you can't really take too much of it.
It can be discouraging as all hell, but fight for good care. Neuropathy is very common-especially in diabetics and alcoholics.
Keep us posted.

Finally I have some answers! I have splashed the cash and paid to see a private Neuro. Turns out the consultant I have been seeing has mis-diagnosed me completely!!! ( I am furious) I have a nasty spinal cord compression in the top of my neck - hence the nerve symptoms all over. I need surgery to remove a prolapsed disc and bone spur that are pinching my cord opposite each other. Phew ... great to have answers. Fingers crossed I get a date soon before any more damage occurs. Thanks for your help and advice

... and I have made a complaint against the doc - he needs to know he made a mistake and not make the same one with anyone else!

You are going to be just fine. Get the surgery. If your nerve is being squished, you will notice no pain that way right out of surgery. let us know when the date is. All of us will keep in touch with you. My own surgery turned out good, so know that you can be a lot better. ginnie