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Functional Neurological Disorder

after over a year, 7 months of that waiting to see a neuolgist, i have a letter back saying functional neurolgical Disorder, have days i cant walk due to muscle tightness,no balance,numbness in face then i get better bar the legs and balance then back it comes cant work as tremmors were that bad as was fatigue that i could no longer drive the Digger i was on ,12 hour shifts, MRI clear,EMG ok,though my leg muscles were twitching, i am demented with twitching here there all over, now reading between the lines “functional” means they think i am at. why would i leave a good job to be on benifits?? and now i have this as a diganosis, i will get hammered by DWP awiting a Atos assesment, every one who knows me all agree i am not right, whether its stumbling about or forgetting words. if Doctors dont belive i am ill who will

I recommend you have a look at the neurosymptoms.org website. It does a really good job of explaining that FND is not “made up” - it’s basically your brain playing tricks on you and causing some very real and sometimes debilitating symptoms.

As far as I know, it’s symptoms that matter when being assessed for ESA & DLA and not diagnosis. I think that assessors may be influenced by people’s diagnoses, but in theory it shouldn’t make a difference to their conclusions.

If, once you’ve read over the website, you are sure that FND does not explain your symptoms, then I would recommend seeing your GP again and asking about next steps (as well as for help with your symptoms). The problem with a second neuro opinion is going to be that clear MRI though - so you are probably either going to have to wait for something to change (and hope that there is something showing on your MRI by then) or see someone completely different, perhaps a neuromuscular or neurodegenerative specialist as both of these specialities include conditions that do not show on MRI? Hopefully your GP will have some good ideas (better than me!).

There are several people on this forum who have been struggling to get a diagnosis for many years. It’s possible to get help from the DWP and Social Services, etc, without a diagnosis, but it can be more of a fight :frowning: Don’t give up!

Karen x

Karen

am just so frustrated, like every one else just want to know what i face, but you just get impresion because of negitive MRI, that they think your at it!

thanks for taking the time

Dougie

‘Functional Neurological Disorder’ is NOT a polite medical term for making it up. That neurosymptoms website that Karen recommended is really good, and does help to explain what they mean when they talk about ‘functional’. It most emphatically does not mean that they think you are making this stuff up. I know that does not really take you any further towards getting to the bottom of what is amiss, but please do allow yourself to be reassured that the doctors do not think that you are (a) imagining things or (b) putting it on.

I am sorry that everything is being so frustrating and just horrible for you. As Karen says, don’t give up. Things will become clearer in the end and soon, I hope.

Alison

x

Hi Dougie

I don’t like to read and run. All I can add to the above is not to worry about ESA, DLA or ATOS they don’t bother as much with dx as symptoms. Just please don’t act the big tough man. You don’t need an acting degree but if it hurts, tell them and if you can’t do something tell them rather than trying to prove a point. And most importantly don’t be afraid to appeal a decision if it’s wrong. I could hardly walk and they said I could go back to full time nursing. Needless to say I won my appeal but they do try to save every penny and give everyone a clean bill of health.

Good luck.

Min

Thank you Ladies

am just to use a good scottish word Scunnered, have had periods of numbness and prostate infections for over ten years and never took time off, been getting better for weeks and now numb face and sore eye is back wake up and eye is stuck to giver, have a wait over over a week for Doc and bet am fine for going, ha ha just want the buggers to belive me, feck no one would choose to be as ill and give up all the things you like doing