Just been diagnosed with functional neurological disorders got a couple of questions thanks

[Sparticas123]

By everyone I got diagnosed with functional neurological disorder means nothing really as IV already had two strokes I am attached to a machine that gives me liquid food ..meds..and water that takes 21 hours a day I broke my neck and spine some years ago which paralysed my throat so for the last 14 years I have been machine fed through a 2 ft pipe that is fitted into the centre of my stomach I am cafitarised bed bound and only leave my bed for hospital appointments I reviewed a letter from the the crash team from the mental health team it says IV been referred to them by my nurosurgen and have give me a time they are coming to see me a bit stressed because I have no history of mental health and have spent the last 14 years in a room attached to hospital equipment the only people I ever see are doctors nurses and Carrera because I have 24 care I am always speek to them with respect and have never raised my voice to any of them because I have now been diagnosed with f.n.d does that mean i have gone mental and I just haven't realised the nuro surgeon said I have developed f.n.d y on earth are a crash team from the mental health team coming did this happen to anyone else they been treating me for epilepsy for 14 years and now all of a sudden IV had my sodium vaporate stopped because he said I have been misdiagnosed and it's f.n.d because of the high impact injuries to my neck and spine IV damaged my nervous system but I feel the same I'm still paralysed down my right side from a stroke I'm still attached to a machine my legs still don't work because I broke my back and neck in a fall I still have sizures I go to the nurosurgen for a check up an my neck and come away with his diagnosed that I have f.n.d that I have never heard of he never told me anithing I had to find out of my doctors two weeks after the appointment so I asked him wot does this mean f.n.d wot Will it do to me he said he had no idea he had never heard about it until he received the letter from my consultant so IV no idea will it progress and kill me can it be cured as though I don't have enough wrong with me at as it is they drop this f.n.d on me and IV got the mental health team coming next week they make me ill with their secrecy and all the nurses that come no nothing about f.n.d they have to Google it to find out what it is wot chance do I have of being cured

[Sparticas123]

Rochdale England

[Katherinedeane]

Oh God so many many hugs. Considering you have so many neuro issues that have definite evidence - spinal injury and strokes are easy to evidence - then I suggest you get a 2nd opinion. I am very worried they have taken you off the sodium valproate - I hope your siezures haven't gotten worse - if they have try talking to a medic who will listen and get put back on it. You MAY have FND - which by the way isn't you going mad - think of the stroke and spinal injury as hardware faults in your computer (brain), and FND being a software fault - faulty signalling for whatever reason without any damage to structures - fMRI lights up really weird with us guys - its real. In SOME people it can be a conversion/psychogenic disorder in response to trauma - and you've had a lot which is why its a legitimate diagnosis to consider BUT it does not require trauma to happen - and the trauma idea is only one in a field with a lot of ideas and very very little evidence. Try to get a referral to a decent FND specialist - Jon Stone Scotland or Mark Edwards England - BUT the key thing is to keep on top of your current health issues. I'm sorry I have a strong suspicion that you are not FND, and that you have a lazy consultant who cant explain your current symptoms and has reached for the "fuck knows" diagnosis - and unfortunately they appear to be of the "mad and making it up" school - hence taking you off meds. Is there anyone that can advocate for you? Its so hard to do it all for yourself. Many many hugs.

[Sparticas123 in reply to Katherinedeane]

Think the nurosurgen is of his head since they stopped my sodium vaporate IV had 6 fits never had one for 2 years not a chance I have fnd I have had spazums ever since I broke my back and neck when I had a stroke I don't have any symptoms that people are discribing on here I have fragments of bone that have broken of my spine and when I broke my neck it paralysed my right side 15 years later I see some nutcase neurologist who said all the other nurosurgen s have it wrong even though I saw proffesaer evans at Sheffield who stated I have had major impact injuries to my spine and neck plus 2 strokes told me I'd damaged multiple nerves in my spine and neck but did not sever them no idea were they get these doctors from now IV got this nfd attached to my medical every one is treating me as if I have mental health issues I have non and never have I have to deal with the mental health crash team coming next week that should be a experience I have asked 4 different nurses that come to maintain my peg and cafeter about nfd and they all said it means IV developed mental health problems how come my doctors and nurses think it's mental health problems they are all supposed to be medically trained this site is the only place I have found saint people I am completely shuting down my medical line IV named the nurses and doctors from coming I'm sure they are trying to kill me y would they stop my epelin and make me start fitting again and chance me having another bleed on my brain I do not have nfd who do you believe with all the rubbish doctors about I have told the mental health team not to bother coming here because they won't get in let them go sort someone else out that needs them I'm not depressed or down I'm a happy person but this nfd thing is making me I'll my throat and tongue were paralysed by the stroke not nfd how do I get this rubbish took of my medical file I have just had to get some sodium vaporate of my friend who is also epeleptic I have spent 6 months in centre's that deal totally with epilepsy IV had it for 14 years then I see some lemon I have never seen before from Spain who couldn't mend a bike and would be better of picking lemon's in Spain and he said I have fnd not amused have to get my self on the phone and get myself a new doctor because my doctor said he would have to Google it to see wot it was my condition has been the same for 15 years I don't have any of the symptoms that other people have on here my symptoms stay the same the don't get worse and they will never get better how on earth has he diagnosed me with fnd the mind boggles if this is the the strength of doctors and medical teems in the UK I'm now worried and I Will now look after myself after banning all medical teams from my home

[Katherinedeane in reply to Sparticas123]

Many many hugs - they aren't all that bad - if you can bear it try not to ban them or they will tag you as paranoid and non-cooperative - which will stop even the good ones from coming to help. Try to get a referral to someone decent, and in the meantime insist on a 2nd neuro opinion to get yourself legitimately back on the epilim - hell even a half way decent GP should be able to prescribe this. The mental health team may be useful - ie they come in an assess you and find no problems they can advocate for you back to the useless medics about getting better care. I know its soo soo hard not to be angry at all of them - I really really get that - but some of them are useful and your care needs are so high you have to try and negotiate the system. Find a good one (any variety, nurse, physio, mental health guys, medics) and then ask them to find you other good ones - they know who they are - of whichever speciality you need. But always remember your right to a 2nd opinion and to not consent to changes in your care. Hugs - hope things go better.

[Sparticas123 in reply to Katherinedeane]

The only specialist in nfd seem to be in Scotland and London and Sheffield my own doctors say I have developed fnd on top of all my other injuries so I have to except IV got it nobody has yet told me how I have developed it I know I don't have any mental health problems so I should pass whatever the mental health crisis team throw at me wot does this mean now I have been diagnosed with it will it get worse better nobody seems to know who invented the name fnd all I keep getting told of my medical team is they have no idea how to treat it and I can't be transferred to any of the specialists because it is to dangerous to move me about with my spinal injuries so I'm up the creek without a paddle had 6 fits since they took me of my sodium vaporate so IV baught some of the black market and put myself back on them and it has stoped me fitting now so I'm happy I think because it cost the NHS a few quid to keep me alive with meds feed and carers they want shut of me IV had that many epeleptic fits over the years some IV had to be put in enduced coma's till I stoped so they put me on sodium vaporate and it stoped them the fits were that bad they caused me to have two bleeds on my brain I was hospitalised for 14 months in Fairfield stroke unit my consultant their put me on sodium vaporate I have 2 consultants telling me different things which one do I believe wot do they treat your fits with fnd nothing wot if I have another bad fit and it causes another stroke and kills me which consultant can I trust either way I still get to spend the rest of my life attached to hospital machines in my bedroom were IV spent the last 14 years winds me up that nearly all the medical people I have spoke to about it tell me it means IV developed mental health problems that's wot it means they all need sending for retraining because it does not say that on here and they would not have specialised teams that deal with fnd round the country if that was the case I don't feel I have any mental problems my family and nurses say I haven't my brother in-law who is a senior shrink says I'm completely fine how come it as took 15 years and 40 visits to nurosergens for them to diagnose it makes me wonder if they are all talking out their arses who will be treating me for this fnd have not found anyone in my are that can plus I can only be treated at home so IV not a lot of chance of even being treated for fnd is their any self treatment that any one else knows how do you all cope with being diagnosed with fnd only to find out nobody seems to want or they just don't have any experience in fnd to treat you seems once you develop fnd they throw you to the wolves and you don't get treated for it seems as though everybody has to just deal with it their selves glad IV been swapped from having ms and alzimers disese to fnd suits me fine y is their so many misdiagnosis IL Tel you y 80 percent of doctors have no idea wot they are doing or Talking about doctor said sorry you have developed fnd but we don't have anyone who is actually trained to treat you so I think they have just added another thing to my medical records bad wen they diagnose you with something then Tel you your on your own because Rochdale don't have a single person trained to put you right