Functional Neurological Disorder - FND Hope
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Who can I see privately? Neurologist has referred me to pain management for Cervical Sensory Radiculopathy. CCG is not replying to my gp'

Hello to all,

I've been very ill since 2013-2014. I started with seveere weakness in both arms. Gp didn't say anything but probably was ME. Last Oct 2016 I had acute very severe pain in left arm, I was screaming in pain. Eventually gp sent me to Neurologist. Diagnosed with 'Cervical sensory Radiculopathy'. Neurologist sent letter to Gp requesting referal to 'Pain management'. Anyway, now my left hand and fingers have gone numb and tingling and index finger is mildly swollen. Anyway can't use my hand properly and losing feeling in it. Its been 6 weeks and the gp surgery said they have to wait for the Go ahead from the CCG. I'm very converned because I read on that If a person has been like this for 4-6 weeks or longer they must be seen quickly. Also on Nice it says 'Red flag' signs ie weakness, burning tingling etc I've got them all and have had them for many many months but the weakness for years. I'm stuck waiting for a reply from the CCG. Is there anything else I can do as my health is very very poor, infact I think I've got MS badly and untreated. I take now 50mg Preg for the arm pain. I had to reduce it because it made me see words jump around (seriously did). I take Morphine of 25mg split through out the day. I had to reduce the morphine to as I was just like a zombie. Who would I go to privately about this? I must see someone very soon as I'm declining very quickly and have no standard of living left and no one cares less (which hurts beyond belief). Any thoughts or help appreciated, thanking you :)

4 Replies

Hi sorry to read about all your struggles. Personally I would ask the neurologist who diagnosed you , who you can see privately for the pain management maybe, if youve not already?

Maybe, if you say where you live someone on here can help a bit more, but it can be tricky, as we all suffer from such a wide range of symptoms to know what to suggest

Really go wish you well

Lucy in Brighton


Thank you for your reply Lucy. My neurologist has already discharged me unfortunately. He did it the day of my appointment :(.

Thats a good idea to put my location. I will try to edit it somehow. Otherwise I'm in 'Warwickshire' for those who are reading :).

Thanks Lucy :)


Hi there, no worries

I have been bounced between NHS and private for last few years..., , so have found you just have to push push push.. I'm afraid, as you are doing

I'd still call them and ask. He will have a secretary that may know. It's so tough sometimes, or call your nearest private hospital and ask for pain management

It's sheer determination and persistence, as we all know that gets us anywhere, it's tough though when we are not right health wise at times

Keep asking 'until' you get the answer you need love

My works private healthcare co now can't help me as they believe there is no known cure as such, for my leg weakness and FND....But I was lucky to get to see the right FND neurologist and had Neuro Physio before they dismissed me! Also had pain management under NHS

Maybe call St. George's hospital in London they just opened a specialist FND centre on NHS, but they may put you in touch with someone in your area, as a starting point

Best of luck



Hi, the specialist unit at St Georges is being updated for a month and they are in a mess, my appointment last week was cancelled then not cancelled, they put whoever you are seeing all over the hospital where there is a spare room for them, the letter we got that cancelled my appointment didn't tell us anything of this, 2 and half hours waiting in the fracture unit where we were told by 3 different nurses to wait, I had 2 massive seizures waiting as noise in agony even with new headphones 🎧 on, over 💯 miles to get there, to be told yet again that I need to go into a specialist hospital that treats FND, there are only 2 in England, I now have another appointment at a different London hospital to be assessed again as to if they will have me as inpatient. I've got to where I am today still being assessed and have paid private to see nuerologists and now through NHS. Maybe if you can get appointment at St George's and there update finished, you could go there private but I have read on here that professor Edwards no longer does private appointments and he is one of leading specialist in England. My pain management clinic was up your tramadol and goodbye, wouldn't even answer me when I asked why can't I walk. I wish you lots of luck wherever you can get in, and hopefully someone can help you. Lisa-anne

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