Diagnosed without brain mri - Functional Neurol...

Functional Neurological Disorder - FND Hope

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Diagnosed without brain mri

artmom profile image
artmom

Hi all

I’ve been diagnosed with fnd. I’ve not had a brain mri only a cervical and lumbar one which was clear apparently. Dr said he diagnosed me on positive signs and no imaging needed. But I can’t help but think my history of depression played a big factor and he’d already made his mind up. He referred me to J Stone site and he followed the ‘how to diagnose a patient’ to the letter (ie don’t quiz on psych issues till end incase you scare the loon off!). I guess I’m wondering about the lack of brain mri. And the problems after an fnd diagnosis of questioning this. It’s hard to understand because on the one hand you are told it is ‘real’, (not psychological) but then in the next breath told the only treatment is psychological.

Hope this question is clear. Thanks.

21 Replies
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Hidden

Hi there. I personally think it’s important that all neurologists exclude neurological diseases thoroughly (including brain MRI) and then refer back to GP with suggestions on where else these symptoms might come from. If they suspect the disorder is functional then they should still leave a large ? still hanging over you and suggest possible ongoing referrals back to your psychiatrist for assessment with their reasoning for their exclusion and this suggestion attached clearly to their clinical letter.

For example they could refer you to rheumatology who can investigate you for rheumatic/ connective tissue diseases which can often cause neurological symptoms without necessarily showing up by lumbar puncture or brain MRI or testing in their office.

In fact there are so many organic conditions that can cause secondary neurological manifestations that I certainly would never believe a neurologist who diagnosed me with FND without having first had all these other conditions excluded properly by the relevant tests and specialists. I would go back to your GP and request that a brain and neck MRI and request that a full panel of autoantibodies are taken - bearing in mind that these can be negative and you can still have a rheumatic disease such as Sjögren’s or Lupus or Ehlers Danlos Syndrome.

Make sure all your vitamin and mineral levels are all well within range too. Best of luck!

artmom profile image
artmom in reply to Hidden

Thank you so much for your reply. I’ve had various bloods - all normal (b12, Vit D, a general one that’d rule out lupus-type things, rheumatoid-type things etc.) I’m concerned that if I challenge this diagnosis in any way I’ll be labelled hypochondriac. It’s not that I don’t believe ‘it’, though what ‘it’ is, is a challenge in itself! I was really wondering if a diagnosis without brain mri was common. Feel like I’ve been told not to bother asking for imaging.

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Hidden in reply to artmom

From what I’ve read here many don’t get brain MRIs now. I think I asked for mine but this was about 5 years ago now. The neurologist asked me if I really wanted this as sometimes things show that are just wear and tear but sound scary when reported. I said yes I want all bases covered. I had small vessel disease/ white matter and paired oligloclonal bands in lumbar puncture - both later found to be related to my Sjögren’s.

Yet still he managed to put functional in my letter so two further neurologists have continued this theme calling it functional overlay. I find this very dubious but it’s very hard to overturn an FND diagnosis even with rheumatic and endocrine diseases definitively diagnosed which have recognised neurological manifestations.

I think it’s worth pursuing if it doesn’t sit right for you but I totally understand the “damned if we accept- damned if we refute” thing.

I choose to refute it whatever they think of me. I’m very frank now and explain to my various doctors that I susprct health economics play a large role in the increasing frequency in the diagnosis of conversion disorders.

I wish you the best of luck finding answers for yourself.

Hi,

Welcome to our world of FND.

Firstly having FND means your brain is working incorrectly!

It is not your fault, you are not making up the symptoms! and your doctor has agreed this fact by checking you for positive symptoms (not false/made up ones) and then giving you the FND diagnosis.

As it is the brain at fault, doctors can not operate or put us in plaster-if only it was that simple so they can only help us deal with the symptoms our faulty brain is giving us.

Everyone with FND are different so are their symptoms.

However there are some classic symptoms that effect many of us and plenty of fellow FND patients who are only to happy to help!

Read as much as you can about FND in reputable web sites and ask questions.

YOU ARE NOT ALONE!

Good luck

Hi there! I’m in a very similar situation to you. I was just diagnosed with FND this past Tuesday, denied a brain/spine MRI and diagnosed with FND within 10 minutes. I’ve had many blood tests done and had my thyroid checked, however was very surprised how quickly I was given this diagnosis. Never had a lumbar puncture despite doctors in hospital saying I need one. I don’t experience anything like seizures or paralysis (currently) but more altered sensations, pains, digestive issues, bowel changes, bladder problems, issues with my ears/throat & more. Researching FND, I can understand the diagnosis as I do match many of the symptoms, but those symptoms do also apply to a fair few other neurological issues. It’s hard to know what to think.

I’m requesting to be referred to professor Mark Edwards @ St. George’s which my doctor is happy to do for me as I’d like a second opinion and, if it does turn out that he agrees I have FND, hopefully some better treatment or at least advice/support. I’m being referred to a clinical psychologist to apparently “re-train the brain” according to my current neurologist, but she did essentially fob me off in some ways - I left with more questions than answers, but am told she’s “one of the best”. Each day I wake up I feel differently about the diagnosis - sometimes accepting and positive, other times doubtful and perhaps even a little angry.

Like yourself I don’t want to push for the MRI or any other tests as I know they’ll think I’m a hypochondriac. I am being given an ultrasound for my abdominal & pelvic pain but we’re all unsure if they’re related to the FND or not. I too have a history (from many MANY years ago) of anxiety and depression which I can’t help but feel has influenced my diagnosis. Who knows.

I hope we both (all) get some proper answers. I can’t advise you really as I’m in the same boat. I’d love to say don’t worry about what they think, just push to get what you require - but I’m struggling with it myself. Just want to let you know you’re not alone.

artmom profile image
artmom in reply to angelina22

Does sound similar to my situation. It does feel a bit like the ‘positive symptoms’ element is ‘’you’ve got a mental ill-health history’’. But exactly like you I’m fully on board with fnd and understand the diagnosis one day, the next feel doubtful that it fits. I don’t, thank goodness, have what feels like the more serious and disabling symptoms either, such as seizures and gait issues. Mainly pain and sensory. But I guess as mentioned above, everyone is different but also there are crossovers. At times I can really appreciate a ‘conversion’ element for me. Anything is possible, just because it’s not been my mo before. I guess where there’s doubt there’s a potential healing/mending delay? Some days so fed up with thinking about this and trying to work it out. That’s the nub of it - it feels like i need to work it out. It’s all so unclear and so many different beliefs about it. Before the diagnosis I was confused, a bit scared, was wondering what the hell was going on and worried were they going to tell me there’s nothing wrong. So yes relieved it’s real, but also still feel quite the same as before - confused and trying to work out what is going on. Knowing you are in a similar boat is very reassuring so thank you for replying!

angelina22 profile image
angelina22 in reply to artmom

Every word you’ve said I could’ve said myself! We’re experiencing a very similar journey! Do update me in future on your situation. I really feel that we will get to the bottom of this. At the moment I’ve found that my attitude has a big effect on how I manage my physical symptoms. I’m making sure to practice gratitude and mindfulness every day, even when it’s hard. No matter how upset I get about this or how unwell it makes me during sudden relapses/flare ups, I’m just so grateful that I’m the one experiencing this and not any of my loved ones - suddenly that puts it all into perspective and I find this weight a little easier to carry. And regarding gratitude, I say thank you every day for all that I do have, for the fact that I’m still alive and kicking, that I have days where I’m able to function better than others etc. It doesn’t fix or cure things, but it sure makes each day easier to get through. Sending you lots of love. I have a lot of hope that we can heal.

Mic67 profile image
Mic67 in reply to artmom

I can relate to you both artmom and angelina. The last few months have been dreadful for me after being dumped with this label and a worsening of walking issues.

I did have thorough testing but still feel I was dumped too quickly especially as I dont relate to a lot of people's symptoms. My symptoms do not come and go, there are no 'triggers' that I see people talk of, I dont have 'flares'. I just have a gradual stiffening of my legs and a permanetn inability to move them in certain positions.

My gait troubles are nothing like the ones described in FND and in fact seem more like MS - with hip hiking and spasticity.

I was put on steroids for possible polymyalgia rheumatica as I couldnt raise my arms, the steroids sorted the acute pain in that area but sadly I think being on them has shown me that my leg issues are neurological and not muscular or inflammatory.

The thought of having this terrible diagnosis with no help and not being taken seriously ever again is beyond depressing. The only thing that I say is that the last few months have made me realise how much I have been swimming in stress hormones for as long as I can remember. I do believe that plus a few health issues last year could have caused this nervous system malfunction.

I finally have an appt at St Georges coming up, I hope I can at last get some answers but in my gut, I still feel I need and want a lumbar puncture. Will report back. Mic

artmom profile image
artmom in reply to Mic67

Sorry to hear things have been worse recently. What you say about your walking is interesting- in December and less so now, on and off,I have pain in my right leg while walking (and also while resting) which led to me limping slightly and moving much slower the worse it got. I struggle to see how this is neurological and not muscular. Anything like this in the past week or so since diagnosis I’ve tried to totally ignore and make myself not compensate to other leg to try and stop it ‘creating’ a problem from what is a functional issue. Don’t think it really works though!

I’m not immobile thank goodness. But this was one of the things I’m sure I mentioned to neurologist that he didn’t make a note of. Hmm

Mic67 profile image
Mic67 in reply to artmom

I've spent a year hoping my walking issues (and leg pain) were muscular and therefore treatable. I have had 2 hip Xrays and a pelvic MRI lol. I also have spinal stenosis so thought it could be that...

All that has been discovered so far is 'laxity of joints' - which I am going to be bringing up to the rheumatologist in March as this could cause big problems!

I think I can tell the gait disturbance is neurological as there is a stiffness around my ankles and weakness in the hip region meaning my foot kind of slaps when it hits the ground instead of a smooth heal/toe motion. I also kind of waddle now! Attractive. :-) It is quite subtle - as in others wouldnt necessarily notice too much but if I walk too much, the whole body hurts as it would when something is out, even slightly!

It is muscular in that the nerves arent firing the muscles as they should.

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Hidden in reply to angelina22

Just to say that all symptoms of FND are very non specific and also cover just about every organic disease there is.

Also Prof Mark Edwards might be an excellent neurologist - but he is not a geneticist or a rheumatologist so he is only going to see your neuro symptoms in the context of primary neurological diseases.

There are rheumatic, cardiac and endocrine and vestibular diseases that often have neurological manifestations and if these are taken out of a broader context then they could easily appear functional when in fact they aren’t.

For example I had stroke-like symptoms in 2015 and my neurologist at the time told me that this was functional left sided hemiparesis. It turned out to be an adverse reaction to Tramadol.

Also he said my small fibre neuropathy might be functional too but it transpired that I have Sjögren’s syndrome, degenerative disc disease and am very hypermobile. My rheumatologist and other doctors agree that the hypermobile knees and arms and my numb feet almost certainty account for my ataxic gait and for what my neurologist thinks of as functional weakness.

The danger inherent to FND is that it’s a diagnosis made usually by neurologists who are only viewing these many symptoms in a very narrow context of their own speciality.

Here’s a link to what has caused mine: facebook.com/23305360673981...

Here’s one example of many: facebook.com/23305360673981....

Mic67 profile image
Mic67 in reply to Hidden

totally agree Twitchy. I have a neuro appt in Feb and a rheumy appt in March (bearing in mind I am now dependent on steroids).

I feel in danger of falling between the cracks of both due to no one joining the dots, communicating with each other and seeing my issues as seperate, whereas I am convinced the whole thing is systemic.

Any idea how I can avoid this happening?

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Hidden in reply to Mic67

Well your GP should in theory be able to pull things together for you since PMR is a common form of Vasculitis. I guess the main thing I would ask is whether your inflammatory markers were high or elevated prior to taking steroids? If so and steroids have pushed them right back down then this is hallmark of an inflammatory disease.

I would say that it might help to obtain this information from your GP or the reception in the form of printed copies of letters and blood work. Then write or email your neuro with this information and explain that you believe this undermines their label of FND for you and you hope to discuss whether residual neuro symptoms could be caused by some other rheumatic condition.

In my case I’ve only recently learned that I am very hypermobile and am certain that this (EDS) is what has been causing my wonky gait and leaden arms and flexible jaw rather than FND. I did mention this to my rheum/ CTD doctor and he agreed that the word functional had no place in my medical story so I really want to get it removed from my notes now. But he’s clearly friends with my neurologist so I’m not sure I trust him to be my advocate!

I see my GP in ten days after gastroscopy and root canal replacements and plan to ask her to assess my joints using the Beighton scoring system for hypermobile joints. If I score high enough (bearing my age and arthritis in mind) then I will ask her to write to my neurologist to explain. I see my rheum again in April and my neuro in May so my plan is to emphasise the musculoskeletal side of things rather than the autoimmune now.

Hopefully we can both get rid of extraneous conversion disorder stuff if we play our cards right? X

Mic67 profile image
Mic67 in reply to Hidden

let's hope so! My first cousin has EDS, the rheumy i saw last year has logged laxity of little fingers and hips, I will also be pushing this further as the last thing anyone should be on with a hypermobility disorder is steroids!

I feel like I am in a living nightmare. Makes me want to bugger off to India, where you get treated as a whole person instead of a series of organs!

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Hidden in reply to Mic67

Ach you get used to fighting your corner by stealth or else head on after awhile. I was first diagnosed with Hashimoto’s 20 odd years ago having been told I was lazy, slothful, uncoordinated and neurotic by my late mum from childhood onwards.

I may not have inherited her elegant frame but I did at least inherit her dogged determination to fight injustice and her innate scepticism about the medical profession!

Increasingly I think that FND is the outcome of beleaguered healthcare systems around the world and a global shortage of specialists in both Rheumatology and Neurology - neither of which are black and white specialisms and both of which include diseases which are very under resourced, mostly incurable and laden of misery.

I bet the wealthy who have BUPA or the equivalent who can buy their medical care never get labelled with FND!

The secret to remaining reasonably sanguine and sane on these rollercoaster journeys is to recognise that doctors are fallible and those doctors who face the busiest clinics daily are going to suffer compassion fatigue and look for ways to discharge patients the best way they can.

PMR plus some overly lax joints might present your neurologist with just such an opportunity if they can only put their professional pride on the shelf?! Xx

Wow Angelina, I felt so sad when I read your post. This is your body, your health and your life and yet you are worrying about your doctors thinking you a hypochondriac. Who cares what your doctors think!

This reminds me of my sister who kept getting chest pains and shortness of breath. They did ECG's on her, they listened to her heart and did a whole load of tests that came up with zilch. They told her there was nothing wrong with her and because she had a history of stress, they suggested this is what was causing her symptoms.

Then one day whilst eating out with her children and our mum, she had a really bad session, so bad that mum called an ambulance. The paramedics did an ECG and it came up fine but they took her to the ER anyway. In the ER they took bloods and did another ECG and then after looking at her notes said she was fine. "As soon as the blood tests come back you can go home," they told her. She almost discharged herself because she was being made to feel like a hypochondriac. She had a cardiac arrest (heart stopped completely) whilst waiting for the blood test. Turns out she had 'Spontaneous coronary artery dissection' (SCAD) which doesn't show up on an ECG.

Fight for your rights... fight for your health. Your doctor should look at every avenue and do every test known to man before diagnosing with something like FND.

I didn't receive any imaging at all, they merely made up that I have hoovers sign despite having no weakness in the first place to disprove! I can't help but feel like they jump to this conclusion as soon as possible so they can write us off and save the NHS some money. No one takes you seriously after so it is perfect for them and torture for us. Maybe i'm being unnecessarily cynical.

artmom profile image
artmom in reply to bluefall

Maybe. Maybe not. I flip from being fully on board and then frustrated at the ‘functional’ tag. Because it does appear that that really still means psychological or conversion. I do think not a lot has changed. Just read this:

‘’...the famous example of hysterics silenced by the presence of soldiers threatening them, and notes that frightening the imagination of woman will suffice for her upset sensibility to fold into itself and cease all hysteric manifestations’’

That’s Diderot (philosopher) discussing hysteria in the 1700s. How much has changed since then? There is so much out there that still holds this attitude.

That beliefs and thoughts on such an ancient disorder are still touted today, don’t even sound out of place, that I can quote it in relation to things I’ve read doctors say in the last year or so...

I really don’t know what to think.

That the nhs really can’t handle much more, let alone that which it doesn’t really know much about, is probably pretty accurate.

Feeling very frustrated and thought I’d post back on this thread as hope someone is still following!

I had my neuropsychiatry appointment today. It focussed, once what I could remember of physical symptoms were noted, solely on my mental health history. And stayed there. I asked how to deal with the pain I experience and got no help. And as far as the tiredness is concerned it seems it just is. Deal. He said the tingling in hands and legs would show on the lumbar and cervical mri I had as that was where nerve connections were, so obviously clear, no point going any further (followed pretty much verbatim by the ‘might show more...lead to greater anxiety’ etc. line).

I am really annoyed now. A waste of my time. I do not need help with my mental health. I gave up on the nhs providing that. I need help with the physical aspects. I know they’re minor and I apologise if I’m fussing. But I have two small(ish) children and it is being in pain that challenges me most and makes me less of the mother I want to be.

Why isn’t my pain being taken seriously?

Has anyone else got an update?, take my mind off myself?!

FIND a new doctor and don't tell the new doctor that you were diagnosed with FND! You could very well have something else that is curable. Once you get a FND diagnosis, no other doctor will take you seriously, its worse than a depression diagnosis. You need to be checked for autoimmune antibodies. It is a test any doctor can order but needs to be sent to Mayo Clinic in Rochester ( stay away from Mayo Florida)

My son was diagnosed with FND at Mayo Florida. I knew it was not FND and I knew there had to be a real reason for his mental and physical problems so I read everything I could. I insisted they do many other tests and it turned out that he had thyroid problems. He had his thyroid removed 8 weeks ago and got so much better. All the mental stuff and movement disorders are so improved. He is still getting regulated on his thyroid meds. We are still investigating Whether he also has Autoimmune Encephalitis, which he probable does from the thyroid tumors. He will go for another lumbar puncture in a couple weeks.

You should of definitely had an MRI, a antibody test for Encephalitis and a lumbar picture at the very least! Please try to get a family member or a good friend to go to doctor with you and be your health advocate. When you are sick, it is very hard to fight this system alone!

artmom profile image
artmom in reply to Momofson

Thank you for replying. I have a gp appointment next week and I’m taking my husband. I’m way more forthright than him but he’s a man...the doctor’s a man...

I’m going to brief my husband on what I expect of him before hand.

It’s really good to hear your son is recovering well from his operation and improving.

(I think I did have ana bloods - is that autoimmune tests? - and they were within ranges. I think thyroid was too.)

Anyhow, really great news re. your son, @Momofson I hope he keeps getting better.

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