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Diagnosed with fnd - functional neurological disorder

I use to be in a women’s hockey team nov 2012 and now I’m practically living in a wheelchair. I have been diagnosed with fnd which causes me paralysis, numbness, chronic fatigue, slurred speech, vertigo, depressed, insomnia, problems with my eyes, hearing and speech, and many more problems as well as chronic pain (fibromyalgia). I’m been admitted in the neurological apartment at Frenchay hospital in Bristol 3 times, I was ruled out with Hughes syndrome, and ms. I know this isn’t a common disorder, who else has it? I have 3 young children and my other half is wonderful. But since I been disagnoised with this disorder I feel as thought I have been pushed aside. I now have a stairlift fitted, awaiting a bath lift, got 2 wheelchairs and a mobility scooter.

Hi and welcome to the forum,

I am sorry to hear of your diagnosis, must be hard to deal with given how active you used to be. I was diagnosed with MS in Feb this year, but only because of a big relapse which led to lots of emergency testing as it was thought i had a tumor. Before the big relapse my neurologist was about to give me a dx of FND and fibromyalgia. I’m sure there are others who use this forum who have a fnd dx too. I found it hard to accept this probable dx, and as a result he asked me to have a look at the website http://www.neurosymptoms.org/ and it did help me understand things a lot better (if you haven’t looked already it may have some advice that could help you?).

As it turned out it was MS after all, we never discussed treatments, so don’t know what could help. I do think if your feeling ignored you should have a talk with your GP and explain your situation. There has to be something that they can do to help a bit. Good to hear your partner is looking after you, just make sure you look after yourself as well. Take care.

Leora x

Hi there,

I am so sorry to hear that you have FND, it must be a very tiresome time for you and your family.

I am undiagnosed and am still currently undergoing tests, so I doubt that I will be able to be of any help really.

However, there are a lot of people registered on here and hopefully someone will be able to give you a little support, you should not just be pushed aside and left to get on with it!, I am assuming though that you have an Occupational Therapist? this is good start! mines been terrific and very helpfull.

I will private message you shortly with my bazaar story and am hear for moral support should you need it.

In the mean time I did find this forum for you, so that you can get advice or support from us and hopefully from the other site too xxx

http://www.functionalmovementdisorder.com/forum/#/

Best Wishes

Hi there,

I am so sorry to hear that you have FND, it must be a very tiresome time for you and your family.

I am undiagnosed and am still currently undergoing tests, so I doubt that I will be able to be of any help really.

However, there are a lot of people registered on here and hopefully someone will be able to give you a little support, you should not just be pushed aside and left to get on with it!, I am assuming though that you have an Occupational Therapist? this is good start! mines been terrific and very helpfull.

I will private message you shortly with my bazaar story and am hear for moral support should you need it.

In the mean time I did find this forum for you, so that you can get advice or support from us and hopefully from the other site too xxx

http://www.functionalmovementdisorder.com/forum/#/

Best Wishes

Hi, I`ve just googled the condition, as my diagnosis isnt complete. It is;

spastic paraparesis/cause unknown/possibly hereditary. Whatever it is, i am told it is quite rare, with just 3 people in 100,000 affected!

Your condition is an alarming one, the quickness of progression is frightening.

My progression into disability was also quite quick.

Like you, I am a full time wheelie user.

I do my best to help myself, but have 3 carers, plus my hubby who all look after me wonderfully.

Have you got good support?

maybe we could become buddies, eh?

luv Pollx

Hi there, I really feel for you. Did all this come on really suddenly? What were your first symptoms? Do you have overacti ve reflexes? It seems to a dx that people get when the doctors cant think of anything else. I am not sure exactly what I have.

Hopefully it will all go away - I just cant believe they cant fins a physical cause.

Take Care

Moyna xxx

Goodness, what a horrible time you are having. Just in case you have not come across this very good website, here is a link.

http://www.neurosymptoms.org/

It is written by a neurologist and is the best resource I have come across for learning about this very troubling condition: what is it, what it isn’t and what is and is not understood about what is going on.

Good luck with it all.

Alison

Hiya, I thought I would post here as ALMOST have same dx as you for FND , so i hope this helps you feel less alone in this. I was seen by the Neurosciences dept in Cambridge yesterday and they are almost sure of this they have ordered complete new set of MRI scans finally after two years !!! They were lovely and so helpful and said I would get further help /appts so where you live, they should do the same for you. My under standing is that I will go back to see them and a lady who specializs in this field on the Psychology side of things. This is for learning to cope with the disorder and re training the brain . We are definately NOT crazy and its a very real and physical disorder. They actually video’d me as my spasms have fogot so bad etc . You must push for further help and ask your doc about further appointments with the Neuros. Are they seeing you again ? Best wishes

Hi, I was told my symptoms were most likely to be FND. My neuro arranged the MRI and basically said that if they came back clear then that would be my diagnosis and she would have no further contact with me. It has come back clear so am now waiting to see what my GP intends. It does seem to be a diagnosis of " we haven’t a clue what is wrong so this is what we will diagnose you with!"

Thankfully mine has eased at the moment , as it has done before. I seem to go between 6-8 months and then get another episode. I have 4 kids so am glad to get these symptom free times as it is difficult when I’m not able to do much. I hope you have a good support network around you

Good luck

Sharon x

I’ve also been diagnosed with FND by the National Hospital in Queens Square, but I’m convinced I have ms. My ms consultant at St Mary’s is still keeping an eye on me (I’ve even had 7 mri’s!!! All normal). He’s booked me in to have an LP in Jan. My symptoms kicked off 2 1/2 yrs ago - the list is never ending! I’ve gradually gone down hill and from being a sporty person I’m struggling to even walk 15 mins in a row. Its so weird. To look at I look fine! Behind the scenes I’m contantly looking for something to sit on and almost dashing around to find the next seat. I’ve been told FND is a code name for psychosomatic symptoms and I just don’t buy it. When I bend down and touch my toes my arms and legs feel weird. Surely thats physical!? I think the neuros are all puzzled by my symptoms and even my ms neuro admits that some people have to wait for yrs before legions show on the scan. with that in mind its impossible to be convinced its FND. Have your had an mri of your spinal core or an LP?

To make matters worse I have to wait until Sept until I’m admitted to the National for treatment for FND. I think I’ll have lost the plot by then!! The National Hospital is supposed to be the top neuro hospital in the UK so I suppose I’m lucky to be on their admission list. None of us can just be left to ‘heal’ ourselves if it is FND so I believe in the interim its important to get as much support as you can. I’ve just seen my gp and been refered to see a pschotherapist - I’ve already had 2 rounds of cbt which wasn’t helpful for me.

On a positive note, have any of you tried hyberbaric oxygen treatment? I go to the MS centre in Harrow (charity). I’ve found regular oxy sessions helpful and i’ve met people with all sorts of illnesses who also feel its helping them. There are people with ms who look great who have been going for yrs and swear it has helped keep their condition stable. Check it out:-))

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I was just dx’d with FND. Hard to accept for I know that I have all the sx of MS. MRI, LP, and EMG were all inconclusive. I know it can be difficult to dx MS but wow are you serious FND. My sx are; pain behind eyes w/blured vision, loss of concentration, pain up and down whole spin jolting and sharp, sleep apnea, numbness both arms, loss of bladder/bowel control, pararlysis both lower legs, and tremor like seizures. And PMD just called and said it would be too dangerous to drive, (No kidding, LOL). The VA has provided; all meds, manuel and a power w/c, handicap ramp, vehicle gate ramp, hospital bed, CPAP machine, bedside camode, diapers, wipes, texas catheters w/ bags, and they’re going to put in a chair lift within the week. So now more PT and OT, even though the first time ended with no improvement, and nothing more they can do to assist me. I do all the PT and OT at home amd my wife is more than helpful in assisting me. Has any one experienced improvement with PT and OT? Please let us know, we are so despondent right now.

This keeps popping up! I was diagnosed with FND in Jan 2014 and I recommend the website www.fndhope.org.uk and there is a private, international FNDhope Facebook group. Please, PM me with any questions, I’m still hanging out here! :heart:

I have been diagnosed with FND after first being told I have multiple system atrophy. I have just been to see a new GP and she has refused to give me a sick note as there is nothing wrong with me! I’d appreciate any advice.

“I’ve been told FND is a code name for psychosomatic symptoms and I just don’t buy it” I’ve read that too Baligirl. The sad thing is that despite overwhelming evidence that there are many diseases that are still not fully understood and/or cannot be diagnosed by current technology, there seem to be some neurologists who still suspect anyone with symptoms they can’t explain are displaying psychosomatic symptoms. There is also an unrealistic and unnatural split between neurology and psychiatry, despite the fact that both, in essence involve some malfunction of the nervous system. One is maligned, while the other is accepted as being ‘real’ and that should not be the case. To put that in context, there is a suggestion now that schizophrenia might be an autoimmune disease. I suspect eventually they may find many more physical causes of ‘psychological’ problems.

There’s an article here by a doctor about illnesses that in the past were considered psychosomatic, but have now been shown to be otherwise. Dr. Dale Peterson: Wellness Clubs of America - Psychosomatic

It seems to me that this thought process is a sign of a lazy or poor diagnostician with a closed mind. Functional ought to be used for illnesses where there is obviously something wrong, but they can’t yet find a cause. There are many such diseases. Indeed many illnesses are still diagnosed using clinical signs. Nobody told my father-in-law he was just thinking himself into it. He was diagnosed with Parkinson’s because his symptoms came in a certain pattern that had been recognised and catalogued, but he had no tests, other than response to medicine, which could just as easily be a placebo effect. I was so angry when one of the doctors in charge of my care carelessly suggested my illness was probably psychosomatic. I wrote down some of the negative things that came with that suggestion, which included:

Any complaint will be viewed as further proof of my hysteria

Being a patient who wants a diagnosis and doesn’t want to be fobbed off will be viewed as further proof of my hysteria

Any further symptoms will be dismissed and/or disregarded unless they can be proven to have an organic origin Any further negative tests will be seen as further proof of my hysteria

I am now frightened to ask for more tests or referrals as every negative test result adds to their ‘evidence’

So not only did it have a negative impact on the way I felt, it could also be viewed as a tool to stop me challenging them. I determined that I must and would fight on. One of the nurses even told me I must. She said many patients were not diagnosed until they had been hospitalised several times. If the nurse could tell me that, why couldn’t the doctor?

I have a different neurologist now. She has explained to me that many people with neurological symptoms such as the ones I am showing where nothing was found will get better without them ever finding a physical cause, but that doesn’t mean there wasn’t one. She is taking my illness seriously and is continuing to hunt for a cause. If my symptoms continue and she can’t make a diagnosis, then she will refer me to someone with greater expertise in the symptoms I’m showing.

Personally, I am fairly sure that my symptoms are radically worsened by stress, but that there is something underlying them and she agreed with that suggestion. I think some of the websites people have pointed to above about FND are great and they don’t imply that FND is anything but a real illness and that is how it should be until they can find genuine proof one way or the other.

I also found it useful to access websites for people who accept they are genuinely suffering from hypochondria. The typical picture seems to be that they worry over all kinds of illnesses including many different body systems. So at some point they may be convinced they have a heart problem or a stomach problem, or start to worry after they have read about a new illness. I don’t remotely fit that picture as my only symptoms are neurological. I am still finding it difficult having no diagnosis and suspect I would also find it tough to be given an FND diagnosis as that is something of a catch-all. But if you are given appropriate and useful symptomatic treatment without judgement, then that is the best they can do for now. If that isn’t happening, then try to find a medical health professional who is more professional.

Hi, I’m really struggling with my fnd and it’s getting worse, I’ve had it for 16 months now and I feel so alone. I wondered if there’s anyone out there that understands and would be willing to talk to me?

Hi,

I haven’t been diagnosed with FND although that was my neurologist’s opinion before all the tests were completed.

Many symptoms of FND are the same as with MS so I’m sure that there are people here who can understand what you’re going through.

What are your symptoms? And how do they affect you? Tell us about yourself and you’ll get replies.

Anthony

Hello

I don’t have FND either, but from everything I’ve read it sounds like a really nasty diagnosis. Partly because it is a diagnosis made in the absence of clinical evidence. So very difficult to live with.

Have you seen https://fndhope.org/ ? There isn’t a forum like this, but on part of the website there is a section of people’s stories. See BEST 18 MONTHS – MICHELLE T. - FND Hope International it might help just to read some other people’s experiences with FND.

Hopefully you will hear from some others with the same diagnosis. As a Anthony said, tell us more about what you are experiencing, and what you’d like to know from others.

Best of luck.

Sue

Hi you need to look at this if it is actually FND as a BLESSING. Yes a blessing as with the right therapy you could be yourself again.

FND is curable. As your in Bristol you need to talk to your GP and get referred to the Rosa Burden Centre. It runs from southmead hospital. its an intensive rehab centre. I would have gone there if my diagnosis had actually been FND.

https://www.nbt.nhs.uk/our-services/a-z-services/neuropsychiatry

I went to one of the top MS doctors in Bristol for a second opinion as i was getting know where. although my neuro was convinced i had MS.

I saw this guy at great cost and he didnt even have my notes. After spending about five minutes with me and doing a few tests he said to me i think you have FND, and explained what it was. He also said if it was FND he would refer me to the programme at the Rosa Burden centre, where they have had some great results with FND. However, until he saw my notes and tests he couldn’t actually give me the diagnoses but was confident it would be that and wrote down the URL of FND on the Internet.

FND is more common then you think.

Anyway 2 weeks later a letter lands on the mat and its from this guy. Blah blah nice to meet you blah blah, however, at this time I cannot give you the expected diagnosis of FND and I hope that you will go back to your neuro Dr… as i have written to him my findings. best regards blah blah.

so i spoke to my Dr who said sorry you got know where i had already ruled out FND because of the positive findings…

so basically i had spent money i didnt need too.

The point being with FND, you can have all the symptoms of MS without the proof. this doesn’t mean you don’t have MS it just means at the moment there is no proof to back up a diagnosis, so they bring out an FND diagnosis, which in a way is a good thing. When this neuro told me i was actually relieved, and said well i dont care what it is just cure me, and i was hoping that i could just go to rehab and be cured. SILLY ME lol.

So please lets look at this in a positive way for you. If you have had ALL the tests for MS and they are all negative and you have an FND diagnosis, please discuss with your GP the rehab. i know it might be difficult with children but it would really help you. You might have to rope in family to look after the family whilst you go there, but one of my friends i have known since she was 12 went there very similar to you, and is now back walking and working. It did take some time, but she got there.

I think also she was relieved that there was nothing physical going on and as it was her brain playing tricks she would try and learn to work with it. a form of CBT.

It can get better.

BUT you cant have it if you havent had all the tests ruled out for MS and if they are not clear.

take heart, you have to be your own health advocate now and FIGHT for what is right for you. so first stop GP tell him you have heard of this centre and at least go and see them. some people have been referred there only to be told they never had FND in the first place.

I hope you find help and peace. FND is just a label you have an illness there is no doubt of that but its not caused through physical manifestations but by overactive brain thinking you have something.

I can tell you with HONESTY when i was told i may have had FND i was relieved, but then was disappointed to find out it wasnt. 10 years well 16 really years i finally sadly got diagnosed with PPMS and now getting worse, i wish to god it had been FND i know i would have beat the pants out of that lol…

big hugs… xxxxxx

I HAVE JUST been diagnosed with fnd a few weeks ago and i am not yet fully understand what it is or if i can fully recover from it or how much my life will change or how fast it will change or how it will affect the other conditions.

Hello Cheryl

Have a look at What Is FND - FND Hope International A lot of your questions should be answered.

All the best.

Sue