I would like to ask others who have been diagnosed with FND a few questions.
1. How long does it take for a neurologist to diagnose FND?
My neurologist diagnosed me in 5 minutes. I have no past history of trauma from childhood. But I do have PTSD after a very traumatic event from carbon monoxide poisoning when I thought I was dying. Since suffering that event I went on to have an MRI brain scan some 6 years after this event. It showed white matter lesions. I was diagnosed with brain injury and multiple cognitive neurological symptoms The radiologist said these lesions can be seen in those who suffered carbon monoxide poisoning.
2. How many tests would a neurologist do and what tests do they do to diagnose FND.
I ask because my symptoms of brain injury cognitive and neurological problems are seen in people who suffered from low level carbon monoxide poisoning. They also suffer from chronic pain and many other symptoms similar to FND. I am a bit lost with this FND diagnoses only because of the neurologist 5 minute tests.
Any help/advice is most welcome.
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Lady70a
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Hi, I think if your symptoms don't fit directly with 'usual' neurological conditions (epilepsy, ms ect) then they just diagnose this. I can't understand why in your case because there is clear organic disease if you have white matter lesions.
Sorry you are going through this. It is very frustrating 😥
I was initially also diagnosed very quickly following a normal brain mri, but fought for further tests. Nothing was shown apart from severely trapped spinal nerves. But I think they just haven't ran the right tests! Of course with an FND diagnosis that won't be changing now that I'm essentially black listed.
Thank you for your reply. I find it frustrating and worrying too. Because giving an FND diagnoses can make other doctors assume the same without looking into alterative reasons such as my carbon monoxide exposure. You say you are black listed, do you mean doctors have stopped helping you? I was told in so many words not to come back because I asked questions.
Hello Lady,
To do my best to answer your questions. I will say, check out my past posts it can help a lot.
What I will say, the difficulty of neuro problems, how they move forward, and how the manifest.
The difficulty for a misdiagnosed you may have to study very quickly and retain a good bit of it.
Thay said, if you haven't had MRI's of your central nervous system and well as test for the nervous system that starts with a p... I'm sorry for forgetting that word.
DNA testing as well as others will help better understand.
With all this said, FND on its own, a few weeks. What you will find, a
There are a lot of people here, as well as myself that were misdiagnosed. So the steps to finding what is wrong is very difficult. Sadly, it can be nearly impossible to find with our current technology we have. While also finding a neurologist that can really understand. This also said, there are lots of neuro Dr's Dr's 40+ years od experience that couldn't figure it out. It is an up and down roller coaster process.
With this all said, don't be scared. I know that is hard, but do your best to relieve yourself of stress. While also interviewing people, I'm fully open for more questions. Typing is difficult for me, but I'm willing to discuss and help. Most people in this community know I will do anything to help.
This said, study. Do your best to learn what you can. My Dr said yesterday, if I didn't do this I wouldn't have been diagnosed for possibly a decade.
Again not trying to scare. This is the reality of neuro problems. It is a fate that most people have to deal with. Especially in atypical situations.
Reach out to me or others. Make posts and those who seem them will help. We are a team here. Collaborating for the benefit for ourselves and others.
If you have any questions check out my past posts while also making your own.
Thank you for your reply Matt. I did not have many tests by the second neurologist. Well, the ones I did have lasted five minutes and he said it was FND. The first neurologist diagnosed my brain injury and cognitive problems from CO Poisoning. I have been trying to find out more information on the symptoms of low level carbon monoxide, because I read somewhere the symptoms are almost identical to FND. But I have lost that information again. If I don't keep a note of things, I forget where I read them.
I don't know much about CO poisoning or toxicity in general. I will be so bold today, that's one of those things medically, we don't have a lot of information on die to, most people don't survive it.
With that said, I reread your post, and I'm sorry for not reading it properly.
From my two cents looking in, you have an organic neurological problem
This said, that doesn't mean you can't also have FND. You can have anything and FND.
All this said, the amount of symptoms that a person with a neurological problem go through. A lot of the symptoms are the same. Also since it is neurological the manifestation of it will be different.
My Dr and I think I have 2 neuro problems. Generalized dystonia fro. A gene mutation. While also having something else. The worst part of this? They don't know and neither do I. My health is draining quickly. Without meds and my cane I cannot walk, simple as that. Also a whole lot of other stuff, that I won't get into detail as of now.
All this said, you can have FND and organic brain disorders.
I would suggest finding a new Neuro Dr. And go down a different path. Do I think you have MS something else? Yes and no. Simply due to I don't have enough facts. Spinal fluid testing, more MRIs of spinal lesions, peripheral nerve damage. Plus many blood tests. Like have go every few weeks becauee that much blood is needed to test. My worst blood work, in terms of amount of viles was 15 at once. Take that as you'd like.
Like said, keep going down the path you are. Take in as much information as you can. Take notes, create a log, do anything to advocate for your health.
I say that because, if I didn't do that.. I wouldn't be here. My body is to the point without medication it's difficult for me to breathe and walk. I don't think I would have made it to 30. Worst part of even that? My neurological agrees.
Take all this as you'd like. As I say, the more you post or comment, the more you will get help for yourself as well as others. We are a team here, work together, fight together, and support one another.
For me it the diagnosis took around 5 minutes - this was the 3rd neurologist that I had seen with no diagnosis from any of the 3 - I also have no childhood trauma. My neurologist works with me as it has affected my gait. Sometimes there are secondary undiagnosed conditions and you may want the neurologist to investigate this possibility. Good luck .
Thank you for your reply. Yes my gait is also affected. I lose balance a lot. I've had two Neurologists and I don't think I will ever get to see another. The second one did not like me asking questions so he ended my visits. I don't think he liked my questions. Seems to me that some like to diagnose FND and then wave goodbye.
If the neurologist didn't provide you with a rationale for their FND diagnosis for you then the first step I would take would be to ask your GP for clarification about what tests should have been done and why the diagnosis was made. Since you are in the UK you can also ask for a second opinion when there is diagnostic uncertainty. I think this happens at St George's Hospital in London. 5 minutes doesn't sound right, to me, and I think if that happened to me I would feel fobbed off and certainly want a second opinion both about this diagnosis and how it was made.
Thanks. The part that concerns me is this: 'and less emphasis is put on an exclusion process (i.e., not identifying an underlying explanatory neurological disease)' because there are hundreds of rare neurological conditions (I have one of them) and people with these conditions can be misdiagnosed with FND all too easily, especially if we haven't had fMRIs.
Thank you for your reply and the link. I am going to take a look at this link. I sufferer with blurred vision and chronic pain also. It may take a while to read it. But I appreciate you taking the time to send it.
It was Lecture who posted the link It's a long read and there isn't what I would call a plain English summary but it's interesting all the same. If you have a screen reader that can convert words to sound that could help although they are usually not sophisticated enough to be able to cope with the numerical tables.
Thank you for your reply. I was fobbed off. The problem I have is this. My GP ignored my plea for help for 6 years. I knew I had a brain problem because of the carbon monoxide poisoning but she and other GPs at the same practice just don't understand that low level CO causes brain injury. One of them shouted at me and admitted he knew nothing about carbon monoxide or the effect it has on the brain. St Georges is a great hospital especially for victims of carbon monoxide. But I moved from England and I now live in NI. I guess I am shocked that a neurologist can make a diagnoses so quickly, and just put aside the CO exposure.
Yes, I think it's shocking too and hope your GPs will redeem themselves by doing the necessary following up regarding the rationale for the diagnosis. I would also ask for a remote consultation with the people at St George's especially since they do know about carbon monoxide poisoning. It's an everyday thing (hence we have monitors) so it is gobsmacking that your doctors claim not to know about it. Shouting at a patient is not OK. They have zero tolerance policies for people who shout at them so should adhere to these rules too.
I feel exactly the same , I was admitted to hospital 3years ago , suspected stroke as my one harm was week n was walking gait , after mri scan n quick check over , 2 days later told it was FND , since then seen nuerologist 2 which was basically told nothing they could do go home n Learn what triggers problems , give antidepressant n co codomal , even went to private nuerologist n was made even more fed up cus he made out it was the way I think n trauma , I havnt had a free day of my symptoms in 3years , yes there are slight better days but fatigue n leg limp n arm weakness n now the weekend dizzy n fatigue even worse , I don’t go out because I get breathless n tired , anyway a member of my family just been diagnosed lymphoma , n she always said her symptoms were like mine 😣, even the night sweats I wake up drenched n my pillow , so waiting on blood results n if they come back positive, I will be kicking a right stink as that will be 3 years of living hell n somthing I could have started treatment for , this FND is used to quick by docs , that they know nothing about , it’s not fair , it’s our lives they messing with , keep fighting my friends , we are worth it 👍
Thank you for your reply. My goodness I feel for you. I honestly believe that some of these doctors really dont care. I question FND because I think its an answer for them when they dont understand that it very well could be something else. I had a blood test a couple of years ago and my white blood cell count was very high. I was told I could see a rheumatologist, I agreed that would be great. Sadly the waiting lists is around 8 years. I hope you find some answers and that you find someone who can help. I wish you well.
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It's a long read and there isn't what I would call a plain English summary but it's interesting all the same. If you have a screen reader that can convert words to sound that could help although they are usually not sophisticated enough to be able to cope with the numerical tables.
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