Purely cognitive symptoms, no weakness, seizures etc.
One day out of the blue I felt incredibly anxious and depressed. I can identify the time of day this happened. I couldnโt sleep but got sleeping tablets from my GP. The feelings continued for a few days but then I had a series of vacant seizures. I retained consciousness but couldnโt move. This happened over Christmas and when I got home I found that simple computer tasks, things I could do in my sleep before, I was unable to do. The whole visualisation of tasks that used to occur naturally was gone. My interest in hobbies Iโd had also disappeared. Then to my horror, I began to realise all the projects I had been working on before that fateful day had essentially been wiped from my memory. My life has been cut in two.
There are other problems too, I find supermarkets and shops difficult. In particular I seem to get overwhelmed by too many choices. I need to buy a new printer but get lost with all the choices. Travel is pretty much impossible, airports are too difficult and I worry what might happen if I actually manage to get in a plane. When I look at a computer I see files and work from the day before my life changed and I find this difficult to accept that all this has gone. Itโs like a dagger through your heart. Going out to restaurants is a challenge, etc, etc.
It took ages to get an FND diagnosis but I feel the FND label is being twisted to fit as I have none of the physical symptoms that FND Groups mention such as seizures, weaknesses, dystonic movements etc. What I experience is a sort of blankness when I go to do something I could have done in my sleep. Iโve not found any treatment that helps. The terrifying blankness is still there. Iโve had all the possible blood tests, an MRI, a CT scan but nothing has been found.
Its like my brain was incorrectly rebooted with an update I didnโt want.
Thank you for sharing your story. I'm really sorry you've been through this. We understand how frightening and life changing cognitive symptoms can be because we've experienced similar challenges ourselves. The way you describe losing abilities that once came naturally is something many people can relate to, and it sounds incredibly difficult.
Can I ask how your doctors arrived at the FND diagnosis? Your symptoms seem to be almost entirely cognitive rather than motor. Did they specifically diagnose Functional Cognitive Disorder (FCD), which is generally considered a cognitive subtype within the FND umbrella, or was it diagnosed simply as FND? We'd be interested to know what positive clinical features or assessments led them to that conclusion.
Also have a look at https://fndnope.org/posts?postId=55
I would get someone to help you look at the latest research into brain fog and cognitive difficulties, especially microclots research in Germany & South Africa. Also , watch youtubes by Dr Binita Kane as she interviews specialists from around the world about the physiological reasons for symptoms like brain fog .
Dr Binita Kane & a cardiologist ( at their private clinic ) will if appropriate, prescibe a triple anti coagulation therapy to help with brain fog .
Look on youtube for Dr Binita Kane
The long covid clinic what you can do to watch and learn.
It doesn't matter if your symptoms began because of a mild covid infection or something else . A massive amount of research has been uncovered because millions globally have new onset symptoms which standard tests show no cause for .
Thank you for this, will definitely check Dr Binita Kane out.
Another angle around Long Covid is that there seems to be a gut microbiome connection?
(As it is with Multiple Sclerosis and Parkinson's)
Research shows that many people with Long COVID have persistent dysbiosis lower, diversity in gut bacteria and a loss of beneficial SCFA-producing species like Faecalibacterium, Bifidobacterium, and Roseburia. This imbalance can weaken the gut barrier, fuel ongoing inflammation, and contribute to fatigue, brain fog, GI issues, and other symptoms via the gut-brain and gut-lung axes.
But not something I've investigated in too much details yet.
You could do a nasa lean test (https://batemanhornecenter.org/wp-content/uploads/2016/09/NASA-Lean-Test-Instructions-1.pdf) to check for POTS, which is a possible cause of the symptoms you describe. This thing about memory and concentration problems sounds like brain fog. If you have POTS it would be caused by reduced blood flow to the brain.
Definitely worth an investigation ๏ปฟ@jakovmrc๏ปฟ
Iโm not exactly sure how to reply to the comments on my post, so I hope this comment can be seen by everyone. Forgive me if this is wrong.
Firstly, I came across a book called โThe New Normal. The struggles of living with FNDโ by Suzanne Chapman. The author is clearly British. She has various physical symptoms that I donโt have, luckily, but her descriptions of various incidents are uncannily like my own experiences. Like trying to buy bread at a supermarket but you canโt because there are too many varieties of bread. This book has at least given me the confidence to post stuff online. The book is actually quite funny too, Iโd recommend it.
I got the diagnosis of FND from a consultant at an FND clinic, how she arrived at that conclusion, I donโt know. Truthfully, the consultantโs thought process was something like, I have no idea whatโs wrong with this guy, so weโll call it FND. If youโre familiar with โThe Hitchhikerโs Guide to the Galaxyโ then it was a bit like the computer coming up with the answer 42. FCD has been mentioned. I havenโt a clue what to do next. Iโve never had COVID.
I had the initial problems during Covid so that made access to medical help very difficult. Iโve worked with computers my entire adult life so now, not being able to do so, is very distressing.
A really difficult thing I find is trying to do something and my mind involuntarily compares this to what life was like before that fateful day, sobbing quietly in a corner often seems the best option.
Hi ๏ปฟ@Con Bradley๏ปฟ , I merged your anonymous accounts, so all good ๐
Generally, Functional Neurological Disorder (FND), when clinicians follow the rules and guidelines, is supposed to be diagnosed on the basis of positive signs rather than by exclusion. It is not meant to be a "nothing else fits" diagnosis. Unfortunately, in practice many clinicians still use it as a wastebasket category.
That said, even when the diagnosis is made according to correct guidelines, the so-called positive signs are not specific to FND, they are also found in many other conditions. We would go so far as to suggest that what is currently labeled "functional" may in the future prove to be a common phenotype, much like pain is a shared feature across many different disorders. In other words, the "functional" presentation is likely a reflex reaction to an underlying cause that is triggering the symptoms. Clinicians will therefore need to focus on identifying that underlying cause.
Did you ask for a second opinion yet?
I will be sure to check out the book you mentioned.
I havenโt sought a second opinion. I have looked into this but all roads seem to come back to the same clinic. Going private looks expensive. There is a clinic in Dublin but getting there would be a challenge but at least Iโd be back home.
One interesting aspect to my case is that Iโve had task specific focal dystonia in my right hand for years, long before this FND/FCD problem. The condition is also called Writersโ Cramp or Scrivener's palsy. I cannot write with a pen, no matter how much I try. FND is often described as a disconnect between your brain and body and with focal Dystonia this seem right. I want to write but I canโt even get the pen onto a sheet of paper. Focal Dystonia is a cruel disease as it often targets the movement you rely on most. Musicians often get it, trombonists get in their lips, singers get in in their vocal cords, pianists get in in their hands. These are career ending problems. The keyboard player Keith Emerson form Emerson, Lake & Palmer developed Focal Dystonia and ended up shooting himself.
There are similarities between focal dystonia and FND in my case.
The suggestions regarding blood flow as being the root cause are interesting but donโt seem to fit my symptoms. Surely blood flow would affect all my cognitive functions?
Did the clinicians provide you with a treatment plan? Or with any steps forward?
Or was this a hit and run diagnosis?
No, no treatment plan or way forward. It was a hit and run diagnosis. A trip to Lourdes was suggested. I was referred to a therapist but I canโt say this has been fruitful. After finding the book by Suzanne Chapman, Iโve finally found someone with my shared lived experience.
An analogy Iโve used with medical people is to imagine getting into your car to drive home and you realise you canโt drive but you drive to work without a thought this morning. There are too many pedals, buttons, and dials to manage. Do I need to put in the key, what side of the road do we drive on etc.
i found the consultant particularly obstinate in her diagnosis, it was like walking into the GP and saying my right knee hurt but the doctor said โOh, no, its your left knee that hurtsโ.
https://my.clevelandclinic.org/departments/neurological/depts/multiple-sclerosis/ms-approaches/adult-onset-anti-nmda-receptor-encephalitis
Iโm not female and I did have an EEG, Iโd forgotten about that.
๏ปฟ@Con Bradley๏ปฟ What you've described could also be brain fog from long covid or similar disease. A lot of people describe things like that. If you google executive dysfunction you'll see a description, that symptom also appears in things like ADHD.
The fact that it started in the early years of covid (what you call during covid) is telling. One possibility is that you had covid but it was very mild (perhaps you just had a runny nose one day). Asymptomatic covid infections can give people long covid (eg https://www.mdpi.com/1660-4601/20/2/1613)
In practical terms what you could do is try to get a PET scan of the brain. If you look at this paper (https://doi.org/10.1007/s00259-022-06013-2) it has a lot of details. Or put "long covid brain hypometabolism" into google scholar and there are many other papers. The way you get a PET scan is to go to a neurologist, and lie a little bit, say you're sure you have long covid and that ever since you got sick with covid you've had these symptoms, and that you read online that people with long covid with your symptoms often have abnormal results on a PET scan, then show them the above paper and ask if you could have a scan like the one in the paper. One complication is that since you have a FND diagnosis on your medical records doctors will often use this as an excuse to refuse you any scans, so you might have to try different places or something.
The fact that this stops you working is really bad.
If your short of cash one suggestion is to get a PET scan in a cheaper country you fly to, for example Bulgaria or Turkey. You could do a telemedicine consultation at home, then fly there and back on the same day. The cash aspect is a really nasty part of this whole FND business that people with more more can simply buy their way out of being fobbed off with an FND diagnosis, while people with less money have to lump it.
Fly to Turkiรซ, I canโt even fly to Dublin. Iโm 99% sure Iโve never had Covid. Iโll see what is possible regarding a PET scan here, thanks.
Sorry to hear you are going through this. It can be a very scary and overwhelming experience. This does sound like a mix of FND and possibly comorbid anxiety/depression, which can all impact cognitive function. You were diagnosed by a specialist and there doesnโt seem to be any obvious reason why the diagnosis should be questioned. You do not need to have motor and sensory symptoms to have FND. There is functional cognitive disorder which has gone by many different names and is not some newly discovered FND subtype.
There is a lot of ongoing research on functional cognitive symptoms. A positive sign of FCD is that you can remember what you do not remember. That is quite rare when there is brain disease causing cognitive symptoms but it is characteristic of FND. It is often triggered by onset of anxiety, panic attacks, viral infections, and more. Your writers dystonia can be a risk factor as well. There is actually some overlap in brain network dysfunction in dystonia and FND. The treatments are also quite similar in that they are based on โactivity dependent neuroplasticityโ in rehabilitation treatment.
I would strongly recommend you do not listen to any of these people. They are people who deny their loved ones or themselves have FND which is why they continue to suffer with symptoms. Itโs very sad and unnecessary. The need to be right becomes more important than getting well. A lot of the stuff they are suggesting is unhelpful. There is published research on โbrain fogโ which has found that the term is used to describe a huge number of experiences and it often means something different between people. It is also entirely non-specific and reported by people with many different conditions and also completely healthy people. It is a huge illogical jump to hypothesize that you have long covid, me/CFS or any other very poorly defined condition based on your cognitive symptoms. Also, cognitive symptoms in people with these conditions pretty much meets diagnostic criteria for FCD which is likely the proper diagnosis for their cognitive symptoms.
There is still a lot of work that needs to be done on the treatment of functional cognitive symptoms. Just learning more about it can be helpful. Here are some resources that could help, including a treatment app being used in research for FCD:
https://www.neurosymptoms.org/wp-content/uploads/2021/02/Functional-cognitive-disorder-information-sheet-v1-final.pdf
https://www.alzheimers.org.uk/blog/functional-cognitive-disorder-fcd
https://www.treat-fcd-study.com/try-mementum-app (Click the first graphic which should take you to download the app)
FND is very real, itโs not your fault, it sucks, and it can get better. Listening to people on this site will lead you down a long path of more suffering. I truly hope this evidence-based information and resources help. Wishing you all the best.
I think there may be a misunderstanding of what is being discussed.
It is also not helpful to dismiss alternative explanations outright, especially when there remains uncertainty about how the diagnosis was established. Considering reasonable differential diagnoses is part of good medicine and does not imply rejecting FND.
Ultimately, I think everyone here wants the same thing: that ๏ปฟ@Con Bradley๏ปฟ receives the correct diagnosis and the most appropriate treatment, whatever that diagnosis ultimately proves to be.
What always boggles my mind is how quickly skepticism about the FND label, especially in cases like this one, gets framed as denial or something harmful. Skepticism is not denial of the symptoms or the suffering. It is a legitimate response when the patient themselves says they don't understand how the diagnosis was reached, no clear positive clinical signs or explanation were communicated, and it felt like a nothing else fits conclusion, with no real treatment plan or forward path.
Shouldn't the priority be listening to the patient's actual experience and asking why the diagnostic process wasn't more transparent? Good medicine welcomes questions and second opinions, especially with sudden, purely cognitive changes that have devastated someone's career and daily life.
Why discourage exploring reasonable alternatives such as Long COVID related brain fog, POTS, autoimmune encephalitis, microbiome issues, and so on? Considering differentials doesn't invalidate FND if that is the right fit. It just protects the patient from a potentially premature label. Many of us have seen cases where digging deeper changed everything.
You didnt mention that Functional Cognitive Disorder has no evidence-based treatments.
eg https://pmc.ncbi.nlm.nih.gov/articles/PMC7850207/
also https://pubmed.ncbi.nlm.nih.gov/37775194/
The fact that FCD has no evidence-based treatments is all the more reason to be absolutely sure that the diagnosis is correct. If an alternate diagnosis turns out to be right you'll be very happy if that has effective evidence-based treatments (eg POTS which I suggested)
nativeโA positive sign of FCD is that you can remember what you do not remember.โ
Eh? On what planet does this make any sense? More circular reasoning made to sound profoundly proverbial? How can science generate evidence of this?
โI would strongly recommend you do not listen to any of these people.โ
Sable Lynx, how are you qualified and who are you really to make such strong
recommendations? Why do you hold such contempt for the agnostic who look beyond FND for answers, and may not be willing to accept it as their final destination? What does it mean to you personally? Are you THE authority being
questioned?
Questioning (even authority), is good for progress. If humanity hadnโt questioned the church, weโd still believe the Earth is flat (just one example). Blind faith just isnโt for everyone.
Itโs a peculiar thing to affix a label to genuinely debilitating symptoms of unknown
origin, then suggest anyone not accepting this label, is faulty somehow. Itโs a
strong case for blame shifting. Peculiar too, to be so doggedly defensive and
interpret non-compliance as an assault on FND (and everyone with it). Hardly
rational behaviour, (unless you build an empire and your lifeโs work depends on
it of course).
โThey are people who deny their loved ones or themselves have FND which is why they continue to suffer with symptoms. Itโs very sad and unnecessary. The need to be
right becomes more important than getting well.โ
Total BS. How do you know any of this? Itโs a sweepingly arrogant assumption. Framing scepticism as needing to be right at the detriment of loved ones is offensive and ludicrous. Personally, the need to be well far outweighed my need to be right. I was too sick to be egotistical about such trivia. The fact I was right
to pursue other avenues of investigation was incidental, (though clearly a sore point
for the FND faithful).
โListening to people on this site will lead you down a long path of more suffering.โ
An ominous piece of advice. Again, how do you know this for sure? Anecdotally, I found the opposite to be true. Looking beyond my FND diagnosis and treating the organic cause of my illness is the only reason I survived and rid myself of FND symptoms.
This sounds a lot like blind faith. Weโre all human. Those of us with first-hand experience of debilitating neurological impairment should, for all intents and purposes, be on the same page. How did it even come about, this polarised narrative of 'us' vs. 'them'?
Everyone is entitled to freedom of will to question authority, and explore other avenues if FND feels like a wrong fit for them.
I sincerely hope Con can find relief from this cognitive nightmare heโs living through, whether down the FND route or an alternative one.
Information on the NIH website and others does suggest you should be tested for anti NMDA receptor encephalitis and points out that 15% of patients don't show up positive on the lumbar puncture test , so it isn't infallible. Makes sense to follow that possible lead before accepting an FND diagnosis? Iamnotadoctorthisisnotmedicaladvice etc.