I call BS on FND

[Ronwyn]

Hi my name is Ronwyn after 5 years of being sick and having every test possible my neurologist told me on Monday I have FND what the stunned and shocked alone and feel like this is all just utter crap a word that neurologist can use so they don't have to work fixing us .😭😭

[Mrsalillie]

I am newly diagnosed too and on my case I think the neurologist spotted on.

Good luck

[andyglasgow2016]

The hardest part is accepting the diagnosis. There are nuerologists about who are very good with help, just depends where you live unfortunately. Understand the calling Bs on it, but in simple terms... your brain can't process what to do as there's almost an overload of info and it's sending wrong signals to get to wrong parts..... I just claim I'm too clever for my brain and it can't cope!

Don't get too down about it... focus on what you can do! Society today is far more sympathetic to people with disabilities

[Ronwyn in reply to andyglasgow2016]

Thank you Andy yes that is a good way to look at it lol need to slow down although I dont so much any way cause I can't lol I love life I'm not depressed I just get these flare ups every year at the same time , i had a tumor in my right ear 👂 Whitc seemed to have been around the time I remember this all starting , but again we just don't know . Glad to be where other can help with their storiys it feel it will help us all ..

Ronnie

[Borrow]

Hi Ronwyn,

I understand how you feel and it has taken me along time to accept. I was diagnosed in Jan 2016 but talking to your doctor may help. My doctor explained to me that every known diagnosis today was once new and not understood very well ie Aids in our lifetime and FND is just such a diagnosis today.

He also tried to explain FND as 'it's your brain receiving and sending out wrong messages and your body is just responding to this faulty information.

The more information the brain receives the harder it can cope and so it sends out even more faulty information. A vicious circle we have to live with and learn to deal with both physically and emotionally.

Much easier to write/say than actually do!!!!!!!

I do hope this makes sense to you.

Borrow

[Ronwyn in reply to Borrow]

Yes this is what my neuro said . i have read up so much on this myself so I can try to self help . I seem to have a high rhumtic factor and high influmation makers neuro said he didn't know why that happens .

But I'm glad to be in a group with others so I can learn what each other goes through cause I feel no one seems to understand and thinks I can just turn it off, if I could I tell you I would this is killing my life . The fatigue is the worst I don't have energy I've lost like 5 kg that the fist sign I get in a flare up , any way sorry I'm just blabbing now . Thank you for replying 😇🌟

Ronnie

[Borrow in reply to Ronwyn]

Hi Ronnie,

You are not blabbing! You are trying to get your head round an awful truth.

How on earth can we fight our own brains and our own emotions never mind the physical problems..........

I haven't an answer but it's nice to talk to other people in the group who are facing the same diagnosis. We are not alone and nor are we going crackers!

I also find the fatigue problems hard, but it is my bad memory that really gets me down. I use to be so good at sorting things out, I was a receptionist and administrator for a large company. Now I can't seem to sort out my own appointments. Ahhhh!!!!!

Life can we very cruel but I will not give up nor will I be ignored!

Finally if it helps any my hubbie said 'he was just glad it wasn't anything terminal and at least we can fight it together' which made me feel better.

Borrow

[Ronwyn in reply to Borrow]

Yes I agree with your hubby I tell my self it could be worse in turns I could be dying although there are plenty of days when I feel like Iam .

The hard part is try to get others without it to know exactly what we are going through . I know everyone gets tired 😴 after s hard days work but for me it is like 10 + worse my speech I can't get the words out no matter how many times I try last week in hospital I couldn't say my name I could see the words in my head but no matter how hard I tryed they just wouldn't come out. It also causes me to be more brain tired and that uses up my energy , there is no way of exsplaining it . I decided to start a daily diary so I can keep track of my day and times that I feel worse or the small moment I get a small burst of energy mainly in afternoon I will get up and do dishes or washing but the time frame is rafly an hour . I feel keeping the diary should help with my memory to , I have 2 assignments left to do and my brain just won't let me understand anything yet I know it all I just get brain parralised lol

So much I don't understand and so little truly known either. i hope you are feeling well today and glad to be able to talk to you and other who suffer just like us

Ronnie👼🙏💟

[Kazandlily in reply to Borrow]

Thankyou for that one fab sentence Borrow...

The more information the brain receives the harder it can cope and so it sends out even more faulty information.

This has helped me enormously in understanding why certain situations can cause flare ups.

Thankyou!!! xxx

[Borrow in reply to Kazandlily]

I am so glad it helps!

We just all need to help one another cope.

All the best

Borrowxxxx

[Ronwyn in reply to Borrow]

So true we do I feel like the medical system has just no time for us trying to get info is redicilous try to find a doctor who mows anything at about FND is even more frustrating but reading everyone's post I feel a part of a community of people who knows just how I feel.

Today is not a good day for me been getting worse over the last week but makes me feel a little better to know I'm not alone,,

[kjkla85]

I was diagnosed in July and still struggling to deal with the diagnosis really. I have times where I accept it and others (probably after more seizures that I don't really understand why they've happened) that I question everything and wonder is this correct, is there really nothing else going on.

My neurologist has said to keep reading neurosymptoms.org as I guess the more you read it the more you accept it?! I don't know. I'm awaiting other referrals one being a neurophysio so am still holding on to hope that someone/something will be really helpful. best wishes x

[Ronwyn in reply to kjkla85]

When I went to my GP after my Neuro diagnosed me he had never heard of it and had to research it himself so he could send me to the appropriate specialist , today is Friday I got my diagnosis on Monday and still waiting on hospital phsyo to get back to me, my back and arm has arthritis and this time my leg started playing up so I pretty much don't leave the house 🏡 cause I don't look to good hobbling around lol if I don't laugh I'll cry 😭 . Also seems to mainly affect my left side and I haven't had a seizure.

But I guess I have to keep positive I think I need to do some reading on the human brain and nervous system maybe there is something that these doctors army picking up on , eg neuro need to have a bigger part in helping when betting better instead of sending us to psychiatrists, beVuse the brain is so complex . My speech is tremble when I get tired 😴 lol I glad to be able to convect with others like you as it does gett hard when no one else understand and thinks I can just turn it off .

It's good to that maybe we can all help each other and maybe we might be able to get a better understanding of triggers.

I best be off talked my hands off lol 😂 and your eyes 👀 I've worn myself out thank you so much for replying .

It is hard the diagnosis but it gives us all hope that knowing what we have we can work to help get our selves better . Lots to learn anything to do not have another flare up 😇 Hope you well

Ronnie

[kjkla85 in reply to Ronwyn]

Yes my GP admitted not knowing much about it and 'leaving it to the specialist'.

I am fortunate in that if I email my neurologist she does eventually get back to me via letter which also goes to the GP so they then call me in to discuss. I'm awaiting referrals to neurophysio and speech and language as my speech is also affected - again particularly when I'm tired/fatigued or over done it. It's all very strange.

I don't get out much either unfortunately. I do try on a good day but it's hard when you aren't allowed to drive and you can't walk very far.

If you haven't already I've found the headspace app/ mindfulness helpful just to be more aware of my body and feelings which helps with listening to them. I've downloaded the reality slap book on my kindle although haven't read much of it yet.

Best wishes

[Hidden]

Hi Ronnie,

If you have a high Rheumatoid Factor and high levels of inflamation ( I am assuming you mean ESR and CRP ) then has Rheumatoid arthritis or some other auto immune inflamatory disease been ruled out as a cause of your symptoms? Have you seen a Rheumatologist?

The reason I ask is that I have auto immune disease ( Spondyloarthropathy with features of Behcets syndrome ) and developed Blepharospasm ( a form of dystonia which causes my eye muscles to go into spasm ). I saw a Neuro and he suggested that it was functional in origin. I was on immunosupressants anyway for my other symptoms and when these were increased the Blepharospam has improved.

Whilst I don't doubt the FND is relatively common it's important to rule out all causes of symptoms before being labelled with it!

[Ronwyn in reply to Hidden]

I have seen a rheumatologist was tested for lupus all my ana antibodies, seen a neuro 2 years ago for tests for ms spoke with him for all a big five min on initial consult at end of a flare up than for 1 min to get results he said no MS go see a rheumatologist again , GP decided to send me to hospital again this year in hope for a fresh MRI but hospital never did one the neuro said it is FND cause it was affecting my left arm, I asked him why I flare up in spring through to summer the heat makes it worse and asked why my rhumatic factor was high he then said go see a rheumatologist . My left are and spine ends up with the influmation witch causes bursitis in my arm and difficult walking cause of spine this has showed up on all my ct scans and blood works , all I want is one just one doctor to please look over my collection of bloods, scans and maybe do a new MRI to look for any change cause I have become more of an investigator to myself than the bloody doctors , not to mention my speech the electric shock in finger tips so I feel pressure behind my eyes like a ring around my head , think I need to go back rhuatoligist had to be a real reason other than FND

[Hidden in reply to Ronwyn]

Are you in the UK? If you let me know roughly where you live I can hopefully give you the name of a good Rheumatologist.

[Ronwyn in reply to Hidden]

Hi there

No I'm in Sydney Australia 🇦🇺 I need to see a rheumatologist I feel I got more of a auto amine something , my flare ups happen at the same time every year same symptoms and get worse on hotter days I have collected all my blood works and saw a pattern after the first 4 years all this happens and my markers go up I feel if it was FND than my rhumatic makers would stay the same ,I have vitamin D and low protein and my white count goes up , my arm gets bursitis from the influmation how could all that be from FND not shaw if any one else has similar symptoms if so would love to find out more. Last year and only last year I had taken neuro fin pain killer for my back it caused a slight bleed in my stomach ulcers I had from the heliobactor virus I was put on realy strong antibiotics for a week I got well within a few days usually my flare ups last atleast 2-3 months but last year less than a month thought I was fixed until this year back to the begging again I'm hate the circle of continued search for a real answer not push into an umbrella 🌂 turn for frighing no diagnosis 😭😭😭

[cgarff]

Hi Ronwyn, Someone on here once gave the best answer to FND, and I have loved it ever since. It doesn't stand for Functional Neurologic disorder, it really stands for "Frankly No Diagnosis"! This definition made me laugh, and it is so true in so many ways. I was diagnosed with FND or here in the US it is called FMD or Functional Movement Disorder.. same thing. Not many doctors know about it, and it seems to be an umbrella term for.. We can't find anything wrong with you, so we will stick you under this Diagnosis because you may fit within the numerous symptoms that have been identified with it.

This last spring however a Doctor at the National Institute of Health in Bethesda Maryland in the US found a place in the brain in the Temporoparietal Junction that is different with FND/FMD patients and normal patients. If you would like to read the paper, it is quite interesting. Look up functionalmovementdisorder.com It will bring you to a page that is Blue with a Brain like plug and an open head to plug it in to it. Go in the search box at the top and type in Maurer. It has a link to the Neurological magazine that was published last spring by Dr. Carine W Maurer. Hopefully it will help to provide some information to you regarding FND. Best of luck, we are fighting a huge fight, and some day hopefully they will be able to give us more answers to what we are going through.

Cheryl

[Ronwyn in reply to cgarff]

Thank you I'll be looking it up now , I also agree to f$&kinh no diagnosis is so true

[Winnie2005]

Hi Ronwyn (love the name, my daughter is Bronwyn), I feel the same. I was just diagnosed yesterday and asked my neurologist if this was just a pretty wrapping for really saying you don't know what is going on. It is very hard to accept this is what has been ruining my life for a year with no proof. I just want my life back and am sure you feel the same. Best of luck to you and you can at least take a small amount of comfort in knowing there is someone else who feels the same.