Going on my experience there’s nothing wrong with getting a second opinion. I was dx’d with migraines causing all my ms symptoms last year. A new neuro has poo pooed that dx and am now being investigated for possible ms again now! Mick
Hi Tinkerbellanoodle, have a look at the www.fndhope.org If you scroll down, near the bottom there is a link to a private Facebook support group. I’m giving it a go myself. As for second opinions - yes, if you feel it is right for you. I know what you mean about being made to feel like you’re making symptoms up. Personally, though it was explained to me clearly at my appointment and I was directed to the neurosymptoms site, I did feel like I was discharged from the neuro rather quickly. From their perspective, I suppose it must be frustrating to see symptoms with no apparent physical cause. However…just because you don’t see something doesn’t mean it’s not there. Surely there’s something physical going on but maybe at a very microscopic level? I’ll try the CBT (if available) and if I get any new symptoms I’ll be demanding another trip to neurology!
Thanks Reikiblossom - I’ll definitely have a look at the links and join the private Fbook page - will probably see you over there! I haven’t yet been discharged by the Neuro - have to go back in 3 months so will just see what happens in the interim. Hope you’re doing ok - big hugs xxx
Hi I just wanted to ask what your understanding of FND is. This is what my neuro says I have and basically been told thank you and goodnight! And not to worry. Whilst this has left me feeling that things can’t be too bad then, I’m wondering if I’m being a little naive about it. Can things get worse? Should I have been offered any sort of advice? Being cleared of ms , I skipped off thinking oh well I’ll be fine then but I’d like to hear your thoughts Thank you X
Hi Beckybluecat - my understanding is that there is a problem in the way the CNS is working but not due to damage or disease (which they would be able to find from physical sample tests and scans). Treatment…well, my neuro said it would be Cognitive Behavioural Therapy, if available in my area, though we might have to say that Chronuc Fatigue Syndrome is the qualifying symptom as FND seems to be poorly understood and therefore poorly catered for. I’m seeing my GP on the 17th - will let you know how it goes. I think you certainly should have been offered a treatment plan! Just because they cannot explain it does not mean that you don’t receive treatment! Take a look at www.neurosymptoms.org and see which ones apply to you. If I were you I’d go to PALS - you have received your diagnosis, you ought to receive treatment. Good luck!
Thank you Reikiblossom I have found your post useful especially as I thought it was a case of just 'put up and shut. I really thought that the door had been closed on this problem but will wedge my foot back in and go from there. Good luck on the 17th and please report back 
Thanks again X
HI
I’ve been provisionally diagnosed with FND after years of tests, appointments etc. Originally I was sent to rheumatology who said it was neurological, then to neurology who said it was ME (clear MRI but VEP confirmed eye nerve damage as a result of ON in 2009), then to ME who said it might be FND! Where I live the ME clinic means you are under a liaison psychiatrist (whatever that means) - this was the one who said possible FND. Despite telling me it wasn’t all in the mind this is how she makes me feel whenever I have seen her. I don’t know what to do any more - just seems I do have to put up and shut up. But what is getting me is that a friend who has very similar symptoms to me (pain, numbness, double vision, fatigue etc etc etc) and also a clear MRI is being told by the consultant where she lives that she probably has MS. We have compared notes (so to speak) and neither of us understand why we are being treated so differently when we seem to have so many identical symptoms and test results. Any thoughts/advice much appreciated.
Thanks
Is it possible to get a second opinion with the same consultant as your friend, or is it a different geographical area? It is frustrating to have to feel like you are viewed as someone without concrete clinical evidence, despite the significant effects on your everyday life. My view is take the treatments offered, keep a diary and when it comes to reviewing you, you have your own evidence to request a second opinion with a neuro, or hopefully a clean bill of health and no more episodes. J x
If one is prepared to travel, you can go anywhere in the country, to see a consultant.
You speak to your gp and ask them to write a letter of referral to chosen cosultant. I picked mine in York. Luckily, it was onlly about an hours drive but I would have happily traveled further.
I’ve recently joined the private support group on Facebook. There are some lovely, helpful people on there too, not only from the UK. You can find the link via www.fndhope.org My neuro suggested CBT as treatment but the GP said that the waiting list is a year long (!) so I’m being referred to the Chronic Fatigue centre instead. I’m still waiting for my referral letter. Has anyone else heard of FND?
A quick update - it is rather interesting over on the FND group on Facebook. A lot of the same sorts of issues crop up. There is a ‘postcode lottery’ for patients diagnosed, like myself, with FND. Personally, I am still waiting for treatment but now definitely on a waiting list. Not for CBT as my neuro suggested but for the second option of going to the local Chronic Fatigue services (well, that’s one of my symptoms covered, anyway.) I’ve recently started getting involuntary movements on top of everything else. They only last a couple of seconds, and only one or two body parts at a time, but I’m getting pelvic jerks, head shaking as if I’m saying ‘no’ or just suddenly twisting off to one side, shoulders shrugging, arm(s) flying up and knees knocking when seated. My GP advised me to just monitor it for now and go in if it gets worse. I’ve applied for Employment Support Allowance and been accepted. I’ve also applied for Personal Independance Payment and am waiting on a reply. If you have any questions about FND do ask, just be aware that I’m not on here quite so often anymore but as I haven’t been fully convinced its not MS (I know there are further tests they could do) I’m not abandoning this community, which has given me so much support 
I totally agree with the whole dx being a postcode lottery. Some neuros rather than wait it out are too quick to label it as FND. If they are doing something beneficial as a result of this then FairPlay, but if it’s just a way of crossing you off their books then, which happened to me, then I feel it’s just an easy option to fall on. The same can be said about those neuros who blame the symptoms on migraine, offer ways of helping but not a cure if one comes along. Again, this happened to me. It left me with no explanation as to my existing neuropathies, but, the only upside is that at least he didn’t write me off. He actually said he didn’t think for one minute my symptoms were functional, but organic based. Hence the migraine theory. I go back and see him later this year, and hope he may have some explanation why I am still getting new symptoms popping up. Sometimes i wonder if offering a dx is meant as a mind over matter approach to think they are helping you, whilst they wait for ms to manifest itself. I suppose only time will tell on that one.
Another update. My eyebrow fell down. Well, the muscles around my right eye are now misbehaving and sometimes my cheek joins in, making me look like Popeye. I’ve made an appointment for next week but because I was worried, the receptionist put me on ringback. A nurse phoned and when I told her all the details and how I couldn’t go back in that day (I needed to do the school run) she got my GP to phone me back. He was fantastic. I was able to admit I wasn’t convinced its not MS but he reassured me that my ‘prominent’ symptoms would have shown up, even on a T1.5 MRI. Also, the fluctuating nature of my symptoms don’t fit the pattern of MS as they change just within the course of a day. He said it himself, I’m in ‘no man’s land’ with this diagnosis because, unlike MS, there is no organic, identifiable cause. I finally had my ENT appointment today and the specialist could find no physical cause for my dizziness (and thankfully, no sign of lingering sinusitis either). She agreed that the neurologist seems to be on the right track with my FND diagnosis. So I am still waiting for treatment. It might not be until June. I’ve just received my PIP form to fill in - wish me luck! Big hugs all round
Anonymous - sorry, it hadn’t registered that I’d had a reply! Yes, I agree that it might be seen as better to give this umbrella diagnosis rather than nothing. Although my neuro signed me off back to my GP after one appointment (which was followed up by my clear MRI), I do feel that at least something is being done, however slowly, and that I could be worse off.
Whow, what a journey. My feeling is this it doesn’t matter what we are diagnosed with providing that we have full confidence in what medical professionals are saying is right. I worry that some of us fall through the cracks just because we don’t quite meet the set criteria for determining MS. Ultimately, we just want the best treatment possible. I want as much of my life back, through medical intervention, as is possible. I am sick of spending so much of it in bed. Lou x
Hi LouLou, you’re quite right. At the end of the day, all that we are asking for is to be listened to and for each medical professional we see to do their very best to help us, label or not. We have to remember that we are worth helping and that to ask for help when we really need it is to show our strength. We also need to remember that these medical professionals are human beings, we might catch them on a bad day, they may not have all the answers we are so desperate for. Sometimes you have to help others to help you. Since getting my cloud of symptoms and on my journey to my own diagnosis, I have discovered that one of my distant family members and also my friend, who was my neighbour, both have MS. Someone else I know has fibromyalgia. If I hadn’t have spoken up about my own experience, I might never have known. Sending lots of love to this wonderful, courageous community xxx
It is interesting that quite a few people on the FND forum also suffer from heat (and cold) intolerance. I’m noting a worsening of symptoms with the onset of hot weather. I finally got a date through for treatment at my local Chronic Fatigue Service, so roll on 24th May. I first went to my GP in August 2012 and its taken this long to get diagnosed and on a waiting list for some kind of treatment!
Hi, I currently have a dx of probable FND, small chance of MS but just had MRI and bloods done and when the results come back MS will probably be ruled out and FND confirmed.
I was reluctant to accept FND at first because I had read some (clearly uneducated) articles that suggest the condition is wholly physcological. It was reading the neuro symptoms websit eand what the neurologist told me that opened my eyes that this is not the case and that FND is indeed a very real condition that is a disfunction of the nervous system.
I don’t know yet what treatment is available for FND but hoping to find out more when I next see neuro in a couple of weeks. Its seems hopeful that syumptoms can be cured or at least very much improved which is great news.
Bunny xxx
Oh and forgot to say… yes I do have hot and cold intolerance, also I have loud noise and bright light intolerance.
I too have diagnosis of fnd. If you have been to fnd hope facebook page you will see a wide variety if symptoms including paralysis. My consultant told me it was about pain management and pushing through the symptoms which is easier said than done! I believe one day they will know more about fnd but until then it is a case of not much medical support