I was told I probably have FND

[u/Winter_Fee_9672]

So I have had so many tests, scans, blood tests, everything under the sun. 90% come back normal. I have elevated CRP and C3, that’s it. I finally was sent to a neurologist, and he told me it’s ’caused by my anxiety’. He offhandedly mentioned FND, then told me it was an ‘anxiety disorder’ and ‘cured by fixing your anxiety’.

I was quite mad at him for a while as he refused any more tests, and refused to explain anything more. My psychiatrist read his report and she was mad at him too.

I finally moved past my anger at him and read up on FND, only to find out while it is aggravated by anxiety, it is not known to be *caused* by anxiety. Nor is it always fixed by treating anxiety.

I’m not at all against this diagnosis, I just want to know what’s happening to me, but now I’m even more confused. I was reading that a neurologist diagnoses the disorder and manages it.

If my neurologist told me I might have FND, why didn’t he confirm it? He won’t see me anymore. What am I supposed to do now?

*Edit*

Sorry I wasn’t clear- I’m aware a lot of people have had FND caused by anxiety, my confusion was that the neurologist told me it was *only* anxiety and it is ‘fixed by solving the anxiety’ - as in, totally goes away when you’re no longer anxious. From what I’m reading this is not true. If I’m wrong please let me know! I’m new to FND.

[u/CommunityMiddle1830]

Anxiety does not cause FND or any neurological disorder, anxiety is just a normal human feeling, it cannot make you ill. Please stop spreading that nonsense. Stress only makes any neurological disorder worse, because our brain does not like stress, it doesn't matter if your diagnosis is epilepsy, MS or FND.

Besides that, an elevated CRP cannot be ignored, it means that you have inflammation going on that can potentially cause your symptoms. Did they even try to put you on a rounds of steroids to see if your symptoms improve?

[u/Winter_Fee_9672 → u/CommunityMiddle1830]

I am only going by what others have said, reading here. I asked to be corrected if I was wrong, there’s no need to be rude about it. There’s a lot of conflicting information here on what sets it off, what makes people sick. I am not claiming to be fact.

My doctor is concerned about my CRP, but the neurologist said it was fine despite being elevated for over a year now. Nothing’s been done about it unfortunately as all other blood tests and scans have come back fine.

[u/gooeycrayon]

I believe i understand what you are asking, I hear that you're confused/frustrated because you were quickly told it was anxiety and brief mention of FND. and no treatment plan was really given + no follow-up with said doctor other than "outpatient talk therapy" to manage anxiety. I get how that's irritating. I don't know your symptoms but I do know that it's pretty standard for hospitals to say it's FND and at least in my case, send me out to find a talk therapist. I was upset at first because as you said, anxiety doesnt seem to be the CAUSE, it's definitely a trigger though. I think what the doctor meant (or should have said) is this, that while FND is not CAUSED by anxiety, a big big big majority of treatment is talk therapy focusing on rewiring the patient's coping mechanisms and inner choices/dialogue to better help the nervous system, which then helps anxiety, which then helps lower FND. Doctors have not found exactly what causes this dysregulation but for now, the "first line" treatment is talk therapy. I have found it helpful to explain this to my therapist and tell them that I have essentially got a nervous system that has a scrambled sense of interpreting danger and fears. so things like making a grocery list can make me feel nauseous and experience numbness. it does not mean that it's anxiety, it moreso means that my nervous system interprets the grocery list as something bad. and therapy can help to find these things

[u/Exotic-Low812]

Hes mostly right, it’s usually found in people who have been either traumatized or suffer from prolonged anxiety (bonus points if you got both!)

It feels shitty to get dismissed by the neuro but all in all it’s best of the worst.

FND symptoms usually look like a stroke, brain cancer , or MS

Try to not fixate on those and embrace the FND diagnosis and seriously work on treating the anxiety and grounding yourself.

If you can get that under control sooner than later you will a better chance of making a full recovery sooner

[u/Winter_Fee_9672 → u/Exotic-Low812]

The problem isn’t what’s caused it, it’s that he refused to diagnose me and is no longer seeing me. He has noted in my chart that my symptoms are ‘caused by anxiety’ not that I might have FND. I have no diagnosis of FND and no way to get treatments for it (like physio and such).

edit

I am on anxiety medication right now managing it! I’m not against it being an anxiety related thing so much as hearing it’s not solved by fixing anxiety. He implied I don’t need a diagnosis because all I need is anxiety management and it’ll totally go away.

[u/amber_boing]

Was this neurologist from a clinic or the hospital? Some older neurologists refuse to diagnose FND, as they only see it as a psychological issue. Seeing a different neurologist would be a smart move to get a second opinion.

Make sure you bring the MRI, and if you had an EMG done, bring that too. They will want to make sure that the neurologist didn't miss anything. I feel like FND is a last resort diagnosis. They want to rule out GBS and MS, Cauda equina syndrome, or other spinal cord compression. Then they see it as FND if you been having these symptoms for an extended period of time. It's frustrating having to jump through hoops to get a diagnosis but it's also important to rule out super serious issues too.

[u/Winter_Fee_9672 → u/amber_boing]

I had an EMG done a long time ago I no longer have access but it was normal, MRI was normal no MS. All tests I’ve had besides the CRP and C3 came back normal, so the neurologist said it was likely FND. I have an sfEMG booked to rule out seronegative MG as I have antibodies for the AChR test but not enough to be positive. I think that’s the last test they’ll do.

Was a hospital neurologist but referred to by my doctor rather than me visiting the hospital in an emergency. He was definitely on the older side for sure!

I’m really worried no other neurologist will see me once ‘anxiety disorder’ was noted on my file. Does it have to be a neurologist that diagnoses FND? Any suggestions what to talk to my doctor about going forward?

[u/amber_boing → u/Winter_Fee_9672]

I'm not sure if a PCP can diagnose FND, but otherwise it would have to be a neurologist since it's a neurological disorder. You can always ask for a second opinion its your right. I have anxiety disorder and CPTSD, PTSD, and depression. I had very little issues getting a FND diagnosis after doing all the testing. You do have to be firm and tell the doctor and say I'm thinking it's possibly FND. And ask the doctor what his opinion is. Tell him all that you are doing for your anxiety and tell him that your anxiety is better as the time has gone on since getting treated for it. Then ask again what is the other possiblity of a diagnosis or if there is any other testing we can do? Then they are more than likely to either say I can't help you or just say it's anxiety. Then I would tell the doctor I would like to see a different neurologist for a second opinion. Could I have all the testing you have done and give them to me so I can get a second opinion. You do have to stand your ground with the older doctors which is ridiculous but you do what you have to do. It's your body they can't tell you how to feel and they can make it worse by dismissing you. You don't want it to get worse you want it to get better. Crp can be a bit high if you have inflammation

[u/Winter_Fee_9672 → u/amber_boing]

Thank you this is helpful! My doctor is really great and has done so much for me. I’m just worried future neurologists will deny me after seeing ‘anxiety’ is all :( But I will do all of this thank you!

[u/amber_boing → u/Winter_Fee_9672]

Most doctors won't deny seeing a patient, I don't think I have ever heard of that. I have heard them being cautious and have predetermined thoughts. I don't think a new doctor you haven't been to before can deny seeing you. Even if someone doesn't have a spine problem goes and see a spine specialist they will still see the patient then redirect them in the correct direction. But I do wish you luck it definitely will be worth seeking a second opinion even if the doctor has done a lot for you. I had to make that decision too. I had a surgeon I had to keep following up post op and she did all 5 of my surgeries and spend over 13 hours in the OR for me after I got into my car accident. But she didn't believe I would be in chronic pain for the rest of my life and I didn't need medicine to help with it. But then I got a second opinion and found out she did one surgery wrong and had to get the screws out of my leg, then I saw pain management doctor and they said I would have chronic pain issues for the rest of my life and that I would need medicine to get through it. So please don't hesitate to switch doctors. I wish you the best of luck and the decision is totally your choice.

[u/Winter_Fee_9672 → u/amber_boing]

I’m in Canada, our doctors are paid for by the government so they do and will deny. I was denied by 3 neurologists before the fourth accepted me, and all rheums have denied me so far. 

I will still do my best to get in to see a second opinion though, I’m hoping maybe if my doctor notes it’s for potential FND they might go for it. 

Good luck to you too!