Hi I'm oskar dad..... He was a very active football mad young energetic lovable boy doing very well at school 🏫 unfortunately last year he caught a virus and suffered 12 weeks of chronic diarrhoea. All of a sudden it stopped and we managed to go on our holiday abroad and he was happy 😁 he went back to football playing his normal Saturday and Sunday for two teams ❤️ around the end of October he started having middle back pain and we thought he had sprained his muscles during a hard tackle!!! He hasn't been back to school yet as it's been getting worse by the day unfortunately 😕 we have been to the doctor's numerous times and he's had MRI scan... ultrasound.... blood test and they couldn't find anything wrong with him 😭 eventually he was referred for physio in another month but the poor lad is in absolute agony so I decided to pay private consultation for spinal specialist.... His recommendation was to see a neurologist so we booked for a few days later 👊💥 now we've been told it may be fnd and he's having a brain and spinal MRI tomorrow afternoon 😔 has anyone else been messed around by the NHS or GP for the same condition? At the moment he's struggling to walk 😭
12 year old boy : Hi I'm oskar dad... - Functional Neurol...
12 year old boy
Absolutely! It so sad, but some of the people we are referred to can be worse than the diagnosis. My advice is to keep advocating for your son. It can be very overwhelming and stressful, but don't give up. Even though I've been diagnosed with FND, I refuse to just accept that when they have found other things that cause similar symptoms. Keep fighting even when it seems impossible.
What's are you doing up in th middle of the nights LOL is it FND insomnia.NIGHTMARE
It is sad to say that you are experiencing what most folk on this forum have experienced, and who quickly realise that with FND you have to fight your way through the scant medical services you can find, and at the same time start your own DIY journey. For your son the start line might be with the book. 'Reset and rewire' by Carey and Watson. .. should the scan turn out negative, which Drs see as confirmation of FND.
Could you kindly consider signing the current parliamentary petition for better services for FND at . petition.parliament.uk/peti... please ?
Hi Oskar's dad, so sorry to hear your son is suffering. They are specific "rule in" tests for FND and the specialist should have not mentioned it until certain.
Its difficult being a parent and seeing your son in pain but it shouldn't take too long to get some answers, hang on in there.
My son has FND (and has experienced a whole array of symptoms over the years) currently laid up with all over body weakness and clearly some link with school, as we were not long in Japan and he was racing his cousin. We also have remission over holiday periods when he isn't stressed (but its a subconscious stress deep down, so hard, but not impossible, to tap into).
I'm seriously not happy with the NHS or my GP as nobody could diagnose it and put it down to backache and a referral for physio in another 5 weeks 😱 as far as I'm concerned he's been neglected and ill be fighting it all the way with solicitors as medical negligence
I hear you and its not uncommon sadly, I vaguely remember making a complaint to PALS. We had wrong referral by Dr to adult neurology, who rejected it and it was just lost, then when we did get correct referral (after I contacted our doctor to get it done correctly, as it had to go via the Consultant). Then no letter written, assured referral to "talking therapy" done and chased letter several times (I was convinced it was all lost as I was at one point asked to email in my notes, or something like that, furious) and it was 6 mths before I got the letter and the referral was done, by this time he wasn't interested and to add insult to injury no commissioning (ie no funding) available as no other condition.
Make sure you get a copy of the letters sent to GP as quite often they are worded differently. I really didn't think he had a functional neurological condition when diagnosed with CRPS (just directed to Prof Jon Stones website), it was only when the physio asked if we had been referred to Neurology as he had FMD. I was totally floored.
Hope all went well for your son today and that he wasn't in any additional discomfort. I try and use less charging words as I was guilty before of bringing additional attention to my sons symptoms (when he was originally diagnosed he was experiencing thigh spasms and he measured the pain as 20 out of 10). , and this can increase the signals.
Many on here are familiar with this scenario, so good for you .. taking up the cudgel, The lead UK FND DRs are more than aware of our situation as patients, and are fully behind the setting up of the multidisciplinary NHS teams that can help us. and chief guru J. Stone has even talked of 'disease apartheid' when it comes to FND...but the finance is not there .. the FND optimal NNAG pathway, set up in 2023 is totally UNFUNDED ..and even with cash available the medics who understand FND are in short supply... private treatment is hard to find. .. hence the petition to try and change things from the bottom up ..The system has neglected the doctors and not empowered them to be able to help us. ..until recently FND was not on the training curriculum for neurologists, let alone GP's, who are not trained in the 'rule in signs' of FND and do not diagnose.
I expect you will have done some homework by now and found that as FND is categorised as neuro psychiatric , and in the DSM V, treatment is mainly based in mental hospitals and the road to recovery much disputed .. and very individual. It will help to read the Carey and Watson book, but also "Functional Somatic Symptoms in Children and Adolescents: A stress System Approach ‘ available as a free e -book. You can read here conversations between knowledgeable doctors and the parents of the suffering children, which may guide you in the best ways to help your son. and fill in the gaping holes left by the NHS . He needs his great dad more than ever right now,
Hello dad, Tomorrow is the big day, so amongst your list of questions it might be useful to find a space for asking if your local health authority (now called Integrated Care something?) fund treatment for FND .. and what sort of treatment is it? If you have not already found a list of the places for 'specialist FND care' you can go to FND Action or FNDHope for one Maybe the neuro can recommend one. I w'd definitely not choose 'The Barberry'. Look for one that has a multi disciplinary team if poss and most definitely one that can deliver the specialist physio your son needs ..the 'usual' does not work. This nitty gritty is often kept 'under wraps'. I have yet to find any private 'all in one' FND care. Fingers crossed for a forward looking plan from the neuro.
Newly diagnosed need advice 
Diagnosed with MS and FND!!
Anyone had experience with getting care for FND in prison (UK)?
White Matter Lesions
Diagnosed without brain mri
