Dis belief in FND

[Leesaloo]

This has become very depressing to read over and over, if you do not believe in FND, if you do not believe you even have FND why on Earth are you on FND website. Simple. Use the website that you do believe is your illness, the negativity is depressing enough from family, friends and professionals, I don’t need to see it every time I log on to this website. Please stop for all our sakes including your own. Big hugs to all. 🤗🤗

[bobbybobb]

well put.

[Chingona]

I don’t believe I have FND and like I’ve said before I haven’t been diagnosed with it .... yet. And yes I’ve questioned if it’s just this way for doctors to throw us because they don’t know what else to do. I have another MRI scheduled and if my brain lesions haven’t changed the neurologist will diagnose me with it. With that being said I’ve found this forum to be a positive experience for me, I share many symptoms with people on here and I can relate to their successes and their failures.So I guess I disagree with you on who and who should not be allowed on the forum. I’m also guessing that I have an idea where this is coming from, and I definitely did not like some of the negativity that recently came up directed towards the members on here. And I do agree that those conversations were not constructive.

I’d like to say that I think it’s healthy and natural to question a diagnosis as new as FND, for me it feels like my neurologist just doesn’t have enough time to dedicate on getting to the bottom of my symptoms. There is also so much confusion between patients and doctors about what FND really means, and being diagnosed is by a vague process. Also as my neurologist pointed out, most people diagnosed with FND don’t accept that diagnosis ( talk about a catch 22!) So where can those of us who are frustrated and confused go?

[Leesaloo in reply to Chingona]

I agree there is a world of difference between negativity and genuinely wanting to know, I would not respond negatively to someone else’s symptoms over and over because they are different to mine, we are all different and that should be respected at all times.

[Mic67]

The point is that no one will agree with each other online, on any website. But here we have an more complicated situation, where people are rightly and understandably questioning a diagnosis which is often thrown at them as they walk out of the medical professional's office after months or years of stress, pain and worry.

They are left on their own, told to research online and to try and identify with people with a vast range of symptoms. If they are lucky, they may get an appointment with a specialist months down the line to get validation and some help.

So understandably those people need a place to question, debate and have an intellectual conversation about what that means to them.

The fact that people have felt prompted to leave this site because they are scared to offend or dont feel able to question things worries me. It's cult like.

A tip: When I don't like the tone of a post, I scroll past.

[Leesaloo in reply to Mic67]

Totally agree, but it’s the fact that the last few times I have come on the website the negativity to FND as an illness was even more depressing, no one disputes the fact that new things are being found all the time but when one new illness is named and others do not agree with the name or the diagnosis over and over am I just expected to roll over and ignore over and over again. If there are people on here who genuinely believe they don’t have FND that is fine BUT what gives anyone the right to slander professors who are trying to help, it’s not like there are hundreds of neurologists, drs, etc who have even heard of FND, slowly it’s being recognised but FND is an umbrella for a horrendous amount of symptoms that we all suffer with each and every day. I don’t go on other websites even if they fit my symptoms and spout off to them that there lead professors have formed cults mainly aimed at women, do not move to Scotland, I could go on but I’ve had enough now. Everyone’s views should be RESPECTED at all times regardless of what you believe or disbelieve.

[Help4 in reply to Leesaloo]

Sorry that you feel people are negative towards a diagnosis etc but everyone has the right to act as they feel. Lucky for you, you believe you have the right diagnosis and sound like you are dealing with this terrible illness.

I was diagnosed with migraines for 5 years even though I was displaying other very troubling symptoms. I tried to take my own life as I was suffering so much and all i got when i turned up in a wheelchair to my neurologist was 'its migraine'. He finally changed his opinion when i was referred by my GP to CFS doctor. He was angry with my GP and said it was FND which he said was psychological and i needed to see a psychologist! I can't even put into words the suffering I have gone through then to be told that 'its psychological'. I had no idea what FND was,thought he was trying to say it was all in my head (through his lack of explanation). Ive now become much more knowledgeable about this illness due to this website.

I came here not to question the diagnosis, but to learn about it, to share my terrible experiences, to get support from other people who have been through similar, and I have found some comfort from this website.

I am not negative about FND, but negative about the way in which I have been treated for the last 5 years, and other people who have gone through similar or worse are at risk of feeling isolated, alone, not listened too, feel crazy, helpless ... if these 'negative posts' help even 1 person to feel like they are not alone and they can share some of their trauma so that they don't end up in a situation of desperation, then I welcome it.

Im sorry you feel the way you do and you are entitled to your opinion, but seeing it from a very different perspective, i disagree.

[Tewa]

Because we need to stand up and advocate for ourselves. There are so many who have been mis-diagnosed with this who have abnormal test results..and our drs are not continuing to pursue/explore testing and possibilities. Most neuros KNOW that a lot of neurological disease take a long time to show up on test results. We are not being negative, we are being pro-active. Sorry if this offends you. I have a long list of abnormal test results dating back when all of this started nine years ago. A functional disorder does not have abnormal test results.

[Momofson in reply to Tewa]

I agree. My son was just diagnosed with FND after a year of total suffering. He has had many very abnormal blood tests and the doctors tell me it is Because he has had lots of blood test and if you do lots of blood test you’re bound to find some there abnormal. I was under the impression that that’s why they did blood test to see if anything was that a normal, proving something was wrong. I believe he has something more along the lines of an Adam a new disease. He is going to have his thyroid out in a few weeks because of a possible cancer and many many nodules. So many nodules on that land tells me that something autoimmune is going on. The doctors disagree and think it has nothing to do with us. I think this new diagnosis is a way for them to make us leave them alone. He has had every test and many blood tests. His has secondary low testosterone and estrogen, very high ACE (which could mean neurosarcoidosis) thyroid nodules, goiters and possibly cancer of thyroid, he has very high IGF1, has had very low iodine (which none of the doctors would connect with the thyroid problems) psychosis for a couple months and all kinds of memory problems, facial tics, speaking and voice problems, off balance, no smell, ringing in ears and more. It screams of Autoimmune Encephalitis or Neurosarcoidosis, especially with the thyroid tumors. Can’t wait to have him get thyroid surgery! I got one hear after diagnosis of FND to learn about it. I think many of you and he are suffering needlessly because of this diagnosis. Though I do believe some people have this disease, way too many have tests that say otherwise.

[mariethewitch]

i dont think its about disbeleif ,as in my own case , its more about frustration and fear ,i have told my neuro that i dont deny that fnd is there i ve had it 12-13 years now and it was ticking along and i could cope with it until march 2017 then for no reason at all it has gone into overdrive for no reason no triggers or traumas in fact life was good ,i knew my limits with the fnd i was working my kids are all grown up i was looking forward to the next chapter in my life , then bam fnd ramps up to permanent status and the best way to describe my symptoms is a cross between a stroke and ms , i am now mute , and after visiting the drs, mental health teams ,neuros, physios ,ot's and feeling like a burden and a strain on the nhs and having neuros and other health proffessionals write complete falsehoods and push me from pillar to post , instead of just doing scans etc and listening (which i know is hard with my speech problems but i type out whats going on prior to appointment to help the drs understand as the last thing i want is to cause stress or be a burden as drs workloads are really high even though the typing causes horrible symptoms alone) it just seems once you have a diagnosis of fnd that nothing else can be possible everything is put down to fnd , so people are left with more questions feeling so alone and end up in very dark places

i do get what you are saying but when someone is so poorly with no help and alone and isolated i would rather them vent there feelings on a place like this and gain support from people going through similar , rather than sitting alone with all their thoughts of alsorts of negative things eating away at them to the point that they give up

fnd is such a complex and frustrating umbrella diagnosis and people need to be able to speak up and vent otherwise it can so easily manifest into mental disorders which further adds to the problems

myself being mute i find the computer a great way to communicate and vent things , and no im not nuts and i am not in denial of fnd but i have lived with this body for a long time now all of my life and i know it pretty well, to know that it is telling me that something else is up , but trying to get the right support so i can help myself figure it out just seems like its impossible on times

all people want is answers and thats where the frustration of fnd arises because it is only a umbrella diagnosis and no clear answers

i suppose everyone is different and cope with life situations the best they can , some people need to vent , some people need to take action, some people just need answers etc... and its about respecting that not everyone handles things the same as everyone else

heres hoping one day everyone will get their answers have a great day

[Leesaloo in reply to mariethewitch]

I totally agree with you my iPad is my link to the outside world, but I do not come on to this website to offend people with my diagnosis, I come on here for support, it’s helped me through some horrendous times too. If you don’t believe in FND that’s fine but I really don’t need to be beaten over and over with negativity for the diagnosis and the Professors to be accused of cults, where are we in this day and age where if you disagree with a diagnosis (it’s a cult, don’t move to Scotland, etc) you can kindly point out why you disagree, you only need to do it once if anyone is interested in your views they can follow you. To me this cult view bashing in needless and pointless, if others feel bullied it’s time for the FND website to get involved. This is a website for FND suffers, to get advice, help, support, or just to chat. I do hope it can stay that way too. We all need help at times we are only human.

[lily82]

So where do you propose those with a diagnosis they disagree with or in the process of getting this diagnosis, go? Should they not have a place to vent their frustration?

I really don't see a problem with discussing studies like this in this group, and questioning the validity of FND.

"An Emerging Culprit for Conversion or Factitious Disorders: Anti–N-Methyl-D-Aspartate Receptor Encephalitis"

researchgate.net/publicatio...

We are allowed to question the validity of FND, if even other doctors are saying things like this (taken from the report)

" We postulate that Anti-NMDAR encephalitis is an emerging culprit for the mis-diagnosis of Conversion or Factitious Disorder due to its typical pattern of initial presentation and lack of early findings on standard medical evaluation"

All we are trying to do is raise awareness of new and rare conditions that could be diagnosed as FND, and flag up other possibilities.

And I still stand by my statement, that FND is based on flawed logic, as not all medical conditions have been discovered.

If you feel that your FND diagnosis is correct, of course that's fine, and I wish you well. Bu we are allowed to discus our experience with this diagnosis and try and help others, if they feel they want a second opinion.

I've met way too many people who've been damaged by this diagnosis, as they ended up having a rare condition.

If you don't like what we write, as Mic67 says, just don't read it?

[Momofson in reply to lily82]

I agree! Many people are sick and misdiagnosed for years with mental illness or FND, when in fact they have an autoimmune encephalitis or some other autoimmune disease. I believe this is happening to my son. A person with FND should not have out of range blood tests as my son does.

[Leesaloo]

If this is how you feel, good luck to you and I hope you get answers on your journey. If constantly knocking a diagnosis helps you but affects someone else negatively then carry on with only what you think matters. Your obviously the centre of your world, very knowledgeable, and could help numerous people with your knowledge, how you beat your drum over and over is my regret. We are not sheep to be told over and over. Once is more then enough to get a point across. I hope your great knowledge will be used to help all of us suffering. If you have no empathy when using your knowledge and experience it’s certainly not something you can learn.

[lily82 in reply to Leesaloo]

Soooo the doctors who made the connection between NMDA and 'conversion disorder' are also 'knocking the diagnosis'? Or is it about raising awareness of conditions that could be FND/ CD? Are they not trying to help other people?

[1fnd Partner FND Hope Volunteer in reply to lily82]

The point of this research article is not to question the FND diagnosis. The point is to bring awareness to the fact that an Anti-NMDAR encephalitis patient may have a similar presentation as conversion disorder. Since Anti-NMDAR encephalitis is rare most doctors are not going to think of it as a differential diagnosis.

"If you don't like what we write, as Mic67 says, just don't read it?" I am going to take this one step further and say if you don't like what someone has written then stop hijacking their posts and start your own. There is a wrong and right way to disagree with someones position or post. This is the wrong way. You can respectfully voice your thoughts once maybe twice then move on, please.

[bobbybobb in reply to 1fnd]

I want this blood test done but it cost 300 POUND to get it done privately. Can I ask my GP to do it.

[1fnd Partner FND Hope Volunteer in reply to bobbybobb]

you can always ask, and if you fit the diagnostic criteria and s/he can't order the test then request that you be referred to someone who can. If they won't then ask for an explanation. Before you ask though, read up on the diagnosis and make sure it is a diagnosis that fits your symptoms. My understanding is that it is extremely rare so be prepared for your GP not to be familiar with it. (Though it has gained popularity since the book and then the movie "Brain On Fire".

[lily82 in reply to bobbybobb]

If you're talking about NMDA, you can ask your GP for it, but they may not do it.

Also, with regards to the 'diagnostic criteria'- there are many types of presentations, and not all have been identified yet. So what you find online may not be accurate or up to date.

[lily82 in reply to 1fnd]

I'm not 'hijacking'. Other people are disagreeing with her- yet I'm the only one accused of 'hijacking'. Surely I'm allowed to reply to people's posts if I disagree with them, isn't that the whole point of a discussion forum? Leesalo's post is calling out others who are questioning their diagnosis and the existence of FND. And basically asking us why we are posting here. And even suggesting that we don't!

So I, and others have a right to explain why we are still posting- for me it's just because I want to raise awareness. It's not only me posting 'negative' posts, and there are many others who agree that it's OK to be on here and questions FND. I'm not the only person who's disagreeing with Leesaloo on here, am I?

And plenty of people 'hijacked' Twitchytoes (who's now left thanks to people in this group) post when she posted the webinar about the dangers of labelling symptoms as 'psychosomatic'. They disagreed with her questioning FND. Seems like one rule for one and one rule for another. I see a lot of hypocrisy here!

Again, you're misunderstanding what I'm saying (my comments to Leesa where rhetorical!) The research is highlighting that rare brain infections could now be one explanation for certain 'conversion disorder/ FND' symptoms as many have clear MRIs etc. Which is what I've been trying to raise awareness on here too. I'm not being negative, and neither are these doctors- mainly pointing out the problem with diagnosing FND and other illnesses may explain the symptoms.

So I'm just saying- if you're going to post research by doctors with a vested interest in FND, who claim that misdiagnosis isn't that high. You should also be posting the research about NMDA- because it may even help someone ask for a second opinion and ask for a test to be done.

You're telling me to voice my points 'once or twice and move on'- but I was replying to people as they'd replied to me! lol Isn't that the point of a discussion forum?? I ignored Leesa's personal comments to me, and just stuck to the information I'm trying to convey.

And I am trying to raise awareness and re-posting in case someone misses it! I am not doing to get at people, or to be negative. This isn't even about me disagreeing- it's trying to educate!

Leesa has this bizarre idea that I'm here to be 'better than other people' or something? I'm really ill at the moment and don't need this stress, and the last thing I'd want to do is come on here to argue with people! I re-post stuff over and over (although I've only done it a few times) simply in hoping that it will catch someone's attention- as not everyone reads every post. It's literally about raising awareness and hoping that it may resonate with someone, and they can maybe ask for tests. Untreated NMDA can be debilitating, and at worse, deadly. I'm sure others who've been misdiagnosed would be on here too-just that they are are too ill and trying to get better!

Also, Leesa is allowed to say personal and insulting comments to me- show me where I've said anything like that to other group members on here?

Like Mic says, not everybody is going to agree with eachother all the time. That's just how the internet, and forums, work.

[1fnd Partner FND Hope Volunteer in reply to lily82]

This person has only posted 3 times. You have responded in a confrontational manner on all of her posts. No one is calling out people who question their diagnosis. They are simply saying they prefer not to be a part of it.

You are welcome to stay a part of the forum. I actually even think you have an important point of view for some people. I did post a link for the misdiagnosis page from the FND Hope website on one of your other posts because it is important that everyone have an accurate diagnosis. However, that does not mean the FND diagnosis is a sham or whatever term anyone wants to use.

I have spent days sitting in meetings with leading researchers from around the world who are trying to make changes and support FND patients. It is extremely complicated and they are spending a lot of time trying to figure it out. I am just asking that we give them a little courtesy. There are bad doctors out there. A lot of them. But there are good ones too.

We have identified many of the problems let's work together to become part of the solution.

[lily82 in reply to 1fnd]

Are you being serious? I disagreed with what she said, and stated my opinion. (And others disagreed with her too- so not sure why you're singling me out). I have never responded 'in a confrontational manner'. There are others who have said the same thing as me- and you've not accused them of 'responding in a confrontational manner'!

(Also, as I've had a brain infection which can affect my communication, I can come off as blunt when I'm writing which isn't intentional.) But I've pretty much said the same thing as others on here- yet you single me out.

Leesaloo literally says "if you do not believe you even have FND why on Earth are you on FND website." She's directly referencing people who are questioning their FND diagnosis (which I've seen a lot of) and basically saying they shouldn't be on here. They have a right to be on here, just as much as those who accept their diagnosis. So Leesaloo is allowed to make numerous posts about 'negative' group members, yet I have to 'move on' when I'm just replying to people?

I replied to her posts- as she was talking about 'people who question FND' (which includes me and others) and I replied to her because I disagreed. Show me in any of my posts, where I've been confrontational- you can't accuse me of that without any proof. You can't just accuse group members of things like this without backing it up, just because you're admin.

Btw, you could have PM'd me about this- instead of making it public.

She IS calling people out, and in particular seems to be singling out another group member, (who has been diagnosed with FND I might add), who has now left as she doesn't feel safe posting here any more.

I really don't appreciate you singling me out, when other have also disagreed with Leesaloo's post and have also 'liked' my posts too. I am not the only person expressing these 'negative' views!! I have no idea why you are singling me out when others, who have been diagnosed with FND, have basically said the same thing as I have!

And I am passionate about this- because I do not want any other person to be damaged by misdiagnosis as too many people have been harmed by it. I am not here for negative reasons or to argue with people. I literally just want to encourage people to get a second opinion if they want to, and to raise awareness or rare illnesses.

You need to allow people to have these discussions.

[1fnd Partner FND Hope Volunteer in reply to lily82]

I am happy to discuss this further through private message.

Thanks

[lily82 in reply to 1fnd]

No thanks!

[Leesaloo in reply to 1fnd]

Hi 1fnd. I have just come onto website today and found in a post my name mentioned at least 6 times, I have responded to people on here but I have never ever named anyone and didn’t honestly think it was allowed. To single someone out in a post this many times is very nasty and demoralising, I don’t know what else to say except I hope it doesn’t happen again to anyone.

[pickleweed]

LOL...It took me over a year to believe my diagnosis of psychogenic movement disorder, which was first diagnosed as conversion disorder but 9 months later given the better label of FMD. The fndhope.org website, with its webinars, helped me to believe in FND. I especially had difficulty accepting that my movement disorder was psychogenic/psychological, partly because "conversion disorder" and PMD were not described to me properly upon diagnosis.

[Bracken123]

Well put leesaloo, my son suffers from fnd , and his symptoms are endless,he has learnt to cope with it and had to accept the condition ,he came off the post ,for the very same reason ,