Ive been told i may have functional n... - Functional Neurol...

Functional Neurological Disorder - FND Hope

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Ive been told i may have functional neurological disorder but im not entirely convinced quite frustrated if im honest need some advice TY

Rachelb91x
Rachelb91x

Hi everyone

Ok so im going to just give you all the background what has happened so far and what's to happen next and hope someone can relate to my situation

So basically in mid February 2018 i started feeling very odd and drained and starting having alot of nerve pain in my face and neck went to GP was put on 50mg lyrica pregablin was told mild neuralgia and i may have been over doing it as i worked a 40hour week so i took that on ny stride took some sick days to recover and i felt alot better as days past as weeks past the nerve pain only what i can say felt like stabbing throbbing radiated down my arm and felt like my arm was weaker and odd sensations in hand and fingers and mild tremors i was constantly feeling drained all down my left side it was like i was tired all down that side i honestly kept thinking its work its me not enough sleep all of those things but i started to feel pressure in my neck and head haf to go back to GP with all these new issues my lyrica was increased to 75mg which helped for couple of weeks now were at end of march still feeling weird in myself was still trying to rule all out i actually went out one night with my friend at this stage and i wasnt drunking any alcohol so this cant be why but my friend shouted your bleeding your leg i had snall gash and blood was running down my left leg and i couldnt feel it or even know how it happened i wrote it off awh could happen anyone but deep down i was like right how the hell did i not feel that which i have small wee scar from now so moving on about a week or so maybe bit later i started feeling so awful nerve pain pressure drained issues with my stomach thought i must be coming down with something i was away at my friends for weekend that sunday i could barely get of her couch my left side was so weak i felt like i could barely stay awake or speak she was so worried i juat over ruled it said im just tired but that night she woke me and was like what the hell are you doing i was like what im geyting comfortable she turned on light i couldnt lift move my left leg it was dead weight numb and pins and needles it lasted 20mins or so me being me said ill let it pass and go to GP tomo which i did i was referred privately for brain mri and my lyrica was increased now to 100mg and told by dr i may need further neurological tests to rule out neurological conditions possible MS or neuropathy i was like ok had some more time off work i continued feeling horrible and i noticed my walk was starting to be affected so i pushed my gp about private appointment i soon got an appointment but on may 1st at work i was so dizzy my leg was playing up and nerve pain and idd sensations i started having double vision and nearly blacked out i was sent to out of hours where gp there said neurological conditions neuropathy ms again sent me to hospital i was admitted to have brain mri, spine mri etc but consultant on ward refused to test for neurological or muscular issues because i was not priority my issue was folic acid and discharged me so unwell i was distraught it was awful so i paid for private mri and had my own gp refer me to private neurologist who i met with in late may he read my mri said my brain structure was normal no delamination but i had 2 very small miniscule lesions one in right front brain and one back left brain which was stated can be quite normal for my age group etc and wrote a referral for yet another private neurologist but also a letter to my gp he stated my reflex were very weak and my leg and alot of issues on left side so my walk got worse pain levels and sensations and at this stage i was haven flare up daily weekly even to point when symptoms happened i couldnt speak or move for seconds to minutes even longer so on 10th june i was so unwell i couldnt hack these episodes or symptoms and they got worseby 12th went back to gp with letter for hospital i was admitted after 4 doctors seeing me i had spine mri came back normal seen public neurologist who was not nice said when you think pain you have it said my walk wasnt overly bad said she thinks i have functional neurological disorder i was like ok made me feel crazy but she said ill order lumbar puncture and specialist bloods and ill also refer for nerve conduction study and emg i said ok why though you made me out to be crazy she said because other consultants want to rule all conditions out i said fine ok i need answers i spent 10 days in hospital i was also being referred for cognitive therapy and pain management clinic which ive not heard anytjing about aswell as physiotherapy ive seen physiotherapist twice and she didnt help said she couldnt till she knew for sure gave me some exercises but they haven't benefited me at all i have my nerve conduction emg test on 24th of this month i have review meeting with physiotherapist on 31st and follpw up app with public neurologist on 12th september also will get my lumbar puncture and specialist blood test results that day too may i also add ive seen 3 eye specialist to rule out optical issues and there are no issues there.. Im not sure what to think about possible FND diagnosis as i struggle on daily basis i use to be so fit and active trained 6 days a week in gym twice a day now i cant at all only thing been done is that im on higher dose of lyrica now 300mg daily plus 100mg tramadol and max strength 400mg ibruopfen some days too i suffer with my stoamch alot and in tabs for that too i lost my job due to my health issues

Has anyone else been in this situation i just cant shake the feeling im been thobbed off and something isnt right

8 Replies
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Dear Rqchelb91x

Hi im so sorry your having all this horrible stuff go on, i can so relate too you. All that you have written the bath I suffered with I've had mri's which showed at lesion on the brain in the stem my EMG was not clear but my lumbar puncture came back clear I've been told it's a multiple sclerosis 1 doctor I've been told it CIS buy another I've been told not to worry about the brain lesions that all people are making too much fuss about them and now I've been told it's functional neurological disorder I really don't think they are actually quite know what they're talking about and I don't think the Medical Profession actually care anymore is not a health service is a business I'm sorry I do not mean to appear negative and there are many many doctors and nurses out there who do a fantastic job butt mehndi medical professions work by the book they've got absolutely no holistic approach to anyone's care and not everyone matches the book.

it might be worth asking the to get your vit D and folic acid levs as well as your b12 you might find these are all low

its a horrible condition to live with and you have my faults but we have each other on here we are a little family who understand each other and that is just sometimes enough knowing that someone else out there just knows that we're not going completely cuckoo and understands us

tabe

Rachelb91x
Rachelb91x in reply to tabey

Sorry for late reply

Oo wow you have been threw the mill

I hope you get proper answers

Ooo dont worry its hard not to be negative in these circumstances sometimes you juat feel like you are being thobbed off

Awh my folic acid and vit b are average and was stated wasnt my issue as i thought that myself

Hi,

I'm sorry it all seems so confusing. FND is often not misdiagnosed as much as other neurological conditions. A few do have a diagnosis of MS down the line, but more often than not FND is the right diagnosis (95% which is high for any diagnosis). Maybe you'll feel better once you've seen someone with more knowledge of FND. Look up one of the doctors listed on the FND hope website.

Little white lesions on brain scans are normal. They are like tree rings. We tend to pick up one at least every ten years in our adulthood. It's good news. It means that you have a chance of recovery. Bad news is that you are facing a diagnosis that many do not fully understand.

There are types of migraine out there that occur without headache. I think an FND neurologist would say it's FND and a migraine specialist may say migraine. It's all information flowing around your brain in the wrong manner so they are both right in a way. FND tends to be distractible, migraine can show neurological deficit. You can have both.

I'm afraid you risk becoming far worse and rather suddenly if you continue to push yourself. You can't push yourself through this and no amount of effort is going to get you better (this is coming from someone who tried to keep going and now is in a wheelchair). We tend to be overachievers, the ones that keep going through thick and thin, but it's not good for you, even dangerous if you now have FND. Read the advice on pacing on the FND Hope website. It's like the serenity prayer "the wisdom to know the difference" is key.

There's a list of supplements that people have found helpful. If you are short of one B vitamin then you can have trouble with them all. There's good arguments, but as yet little research, but they work as a complex and taking more of one can lower the levels of others. Doctors tend to say "normal" for B12 and vitamin D when they are not as high as a neurologists would like. You need to find out the actual levels they should both be above 500 - it's recommended on the FND Hope pages somewhere. Getting your GP to understand that this higher level is needed can be like banging your head against the brick wall. Luckily both are available over the counter. If you have gut problems then sublingual sprays (under the tongue) are available so the vitamins go straight into your blood stream. They do no work over night and sometimes take up to a year.

It's about optimising your health in general, so if you have other conditions then make sure they are well in control. Get your sleep into a routine. CBT is helpful for this and is available on the NHS and is gold standard for insomnia. CBT can help. It's not "all in the mind", but that does not mean that you should neglect your emotional wellbeing. Emotional liability, depression and anxiety are all things we can suffer from.

You are not alone. I hope this helps. xx

Rachelb91x
Rachelb91x in reply to thinkin

Thanks for reply

I feel i need a second opinion so im going private to a neurologist specialist in late September

I tend to put pressure on myself but i will not over do it

Thanks for reply

There is a book called Functional Neurologic Disorders, volume 139 of the Handbook of Clinical Neurology, that explains how specific FNDs can be diagnosed. There is a Kindle version of it that can be listened to, in addition to other paper and electronic versions.

Oo thank you ill look them up thanks for help

Have you been tested for NMDA antibodies?

I was misdiagnosed with FND- had millions of symptoms. Eventually got the correct diagnosis.

Everything test I had came back normal, MRI etc. Only a blood test confirmed what was wrong with me.

Rachelb91x
Rachelb91x in reply to lily82

What is nmda antibodies

Oo really so you know now whats going on

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