My neurologist has just diagnosed me as FND and has suggested psychotherapy. However, I feel certain my symptoms are dopamine deficiency related.
E.G - motor difficulties - extreme leg stiffness, hypertonia, hyperreflexia, falling over, aching legs, PLMD in sleep. All starting 12 months ago. I feel like he'd pretty much made his decision at my first appointment.
He ordered an MRI "to be safe, in case it was MS" which came back normal, then ordered an EEG when he saw a video my boyfriend filmed of my legs in my sleep. I assumed the EEG was actually a polysomnography (to diagnose PLMD) but when I asked the technicians if the wires would be attached to my legs to pick up movement, they said they didn't have any wires long enough! They then proceeded to do epilepsy tests! This seemed odd to me. I figured a neurologist would know the difference between PLMD and epilepsy. He sent me a letter saying the EEG was normal and so is diagnosing me with FND/non-epileptic-attack-disorder and I should see a psychiatrist. Where did he get the idea of epilepsy from in the first place?
The reason I am so interested in PLMD, is many years ago (almost 10 years) I went to see my GP about my sleep leg movements (it was keeping my boyfriend awake) and he told me what he suspected it was and said parkinsons medication can be used to treat it. I didn't like the sound of the side affects and decided not to proceed. Now 12 months ago, I start experiencing motor difficulties with my legs. Am I going mad, or is there some logic in my thought process that my problems are dopamine related?
I am terrified of being wrongly diagnosed. I am not sure what to regarding this. Feeling very stressed.
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Numina
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Hi, I consider myself an FND Veteran now and suffer from Motor Related FND which can affect any muscle in my body, but mostly my legs which go into strange positions when I try to walk or go rigid and stop me walking - it is like fighting for movement when your brain decides it does not want to let anything move!
I went through many tests and therapies early on in the FND whole `Takes Years Diagnosis' cycle, and yes MS was mentioned more than once - even though not by me?
I actually found the most help via Dystonia Society, because my symptoms seemed to fit most of their criteria and they have a phone helpline for when you are really stressed out!
Now because of the Periodic Dystonia type symptoms my Neurologist thought it worth looking into Dopamine Responsive Dystonia (DRD) which basically means for a few weeks you go onto Sinemet Tablets (Parkinson's Dopamine- Replacement Drugs) to see if that improves movement. It did for me, but it was not text book for Dopamine Responsive Dystonia i.e the improvement was not total for every hour of the day during the drug taking period (partly a relief as Sinemet is a very strong drug with terrible long term side effects). Then I got told I had FND, though frankly it was not that simple as my then Neurologist failed to explain properly what FND was - it was no longer her problem! Indeed I felt she could not get rid of me quick enough, so she could concentrate on `real' Neurological symptom patients!
Anyway, I eventually was lucky and got Inpatient Therapies - where I met several very different symptom versions of FND Sufferers, two of which had Non-Epileptic FND. They had gone through extensive EEG's and Observation prior to the Therapies course and been on Epileptic medication. They were immediately taken off the Epileptic medication being told that it was doing no good and could cause more harm! And like me, went through a program of brain retraining. That said, none of us were `Cured' but can manage our daily lives a little bit better.
As for the legs problems at night, it may well be because you are pushing yourself too hard during the day or doing activities which are triggering your brain to go into `Protective Mode' - where it deems your actions to be dangerous and so wants to lock your muscles/joints up? Painful spasms are common for FND and definitely an indication of fighting for normal movement too hard.
Think of it as the classic `Flight - Freeze- Fight' inbuilt survival response going hypersensitive or wrong, and cutting in to `Protect' you from doing anything your brain considers dangerous or unstable. My advice would be to try and level out your Adrenaline, when that raises all your brain gets is overloaded and more physical connections get confused.
So think about not getting too: angry, upset, stressed, tired, hot/cold and expect loss of coordination after a dramatic action packed movie!
Basically pace yourself and look for modifications in your daily routine to take the strain off your muscles/joints.
It is `not all in the mind' these are real physical symptoms (see Prof John Stones Website) and you need to see it as a physical limitation, but not a total disaster in your life.
How long did you take the dopamine medication for? Did it work for a few hours a day, then stop? and did this finding not suggest parkinson's?
With regards to Periodic leg movement disorder, it's been happening for nearly 10 years. I'm only aware of it because my boyfriend is kept up at night while I'm kicking away in my sleep. 🤭
The problems with my leg stiffness affecting my ability to walk started just over 1 year ago.
As both symptoms can be caused by dopamine deficiency, I'm convinced that that is my problem.
I share some similar symptoms and you're right, they look very similar to dopamine deficiency.
FND is meant to be a rule-in diagnosis, not just ruling out other things. It is supposed to be diagnosed using positive signs.
The neurologist needs to explain to you WHY you have been diagnosed with NEAD, particularly when you don't seem to be experiencing seizures?! Is he trying to say the leg movements during sleep are seizures?? I would be asking what are the positive signs of this?
I would write to his secretary asking for further explanation? You could also try and get a second opinion OR asked to be referred to an FND specialist to explain the diagnosis further.
I wrote to the neuro who diagnosed me and asked him to refer me to Professor Mark Edwards at St George's. He is an FND specialist.
This was the beginning of me beginning to accept it as a diagnosis, he then referred me to a specialist physio on his team for neuro-physiotherapy. I learnt some good skills but still have motor issues.
Simply sending people to psych is an old idea, not appropriate for many and is often used by professionals with outdated ideas of FND.
It's a good job I sleep alone as I have very violent leg movements to the point that my calf muscles are often killing me the next day! I just thought I had particularly bad restless leg syndrome. Who Knows!
I think I need to find out who is supposed to refer me, the letter from neurologist was very unclear and almost sounded like a mere suggestion for my GP.
My boyfriend has filmed my legs a few times in my sleep. Shame I can't post the videos on here. It's well wierd! Kind of like all toes, ankle and knee flexing 💪
The PLMD is a dopamine deficiency. I was diagnosed with that about a year ahead of developing FND in a sleep study, along with sleep apnea. Unfortunately no one knows the exact cause of FND, some newer research is showing differences in fmri’s, also there’s solid research showing excessive glutamates in the limbic system that spills over into the motor region creating the involuntary movements.
I had your exact experience in the middle of grad school & no amount of psychological counseling ever made one difference in symptoms. Mine seems to be more remit/flare pattern every few years (had for 11 now)
I had success with Transcranial magentic stimulation (which does increase dopamine, but also all neurotransmitters are balanced) and a plant based keto diet (don’t know if it’s because it reduces glutamates in the nervous system or neuroinflammation)
Good luck to you! It’s a tough illness to accept and your kind of your own “clinician” post-diagnosis finding what works for you. I do think there’s a neuroinflammatory component (and probably a microbiome imbalance as all illnesses are pointing that way, even Parkinson’s)
My sleep doctor never treated my PLMD until 10 years later. At that point I was already using Valium 7.5mgs to control muscles at night (which is another option) & in the middle of TMS (also I am extremely sensitive to all meds typically and didn’t want to have a bad reaction after reading how those drugs make people change personalities, gambling, sexual uncharacteristic behavior, compulsions, etc). She did prescribe one in 2018 that I never tried.
It’s worth a try, it’s better not to suffer as sleep is essential. Also it’s a quite debilitating to lose control over your body at random times. I’m sorry you’ve been given this crappy label btw. Fight on for your best quality of life!
I also was diagnosed with FND and now I realize that I was taking Glutamine Shots for years. When I stop the shots that is when I started too have all these symptoms. I had cycles which were like I would staggered when I walked and it felt like my brain, eyes and ears were not connecting. I would have the staggering for 4-8 months at a time then it would just go away like it never happen. The good cycle would last for a month then it just came back and it would last a little bit longer. As of today I am much better but if I am around loud noises and trying to cross a busy street my brain and eyes get so confused and then I will staggered. Once I am out of that environment it settles down. At the same time I have been having Dysfunction tubes in my ears. I have been told by many specialists that my ear dysfunction isn’t related. “Oh really “ that’s hard to believe. I have been at the Mayo Clinic where I was diagnosed with FND. I felt I was just labeled without proper testing. So who knows what causes FND! It could be a mixture of things. I also had Mercury Poisoning 3 times, had a lack of Vitamin D, Vitamin B12 was low, Vitamin C was low, Zinc was low Omega 3’s was low and I have Sjogrens, Secondary Hyperparathyroidism, EDS Small Vessel Spasms and a few other minor things. No thanks to Mayo the only thing I got from them was half ass testing and a diagnosis of FND. All other diagnosis came from other institutions. It was an extra long journey for me.
Thanks, very interesting. I was taking the Glutamate injections then I stopped taking them because I couldn’t take the needles anymore. Then shortly after that I must of had some reaction from stopping the injections. I then was diagnosed with FND. I am find now so I don’t think I had DND.
Hi my Neurologist put me on a trial of Sinemet (Dopamine Drugs) for 2 weeks on a low dose and then 2 weeks on a higher dose, the lower dose did work for about 6 hours a day every day during the trial, the higher dose just made me spaced out and made no difference to my legs. Again it was the fact the Sinemet did not work 24 hrs a day `curing' the leg stiffness meant it was not Dopamine-Responsive Dystonia and I was taken off the drugs.
Cannot speak about the restless legs syndrome part of your condition, because I had the opposite, my leg, back etc were all stiff and muscles locked down at night in bed more severely than during the day. But after the drugs trial period and 6 months later, the muscles gave up being tight at night, it's like they could no longer maintain that system?
Good luck with getting a referral to see an FND Specialist Neurologist, I had to convince my GP to get request special funding from the Primary Medical Trust budget, so as to be referred for FND Multidisciplinary Therapies and even then, never saw an FND Specialist Neurologist!
I’m really sorry for what you’re experiencing. On top of feeling unwell you have to deal with drs like that with outdated ideas. Lazy and uneducated. Thinking is slowly moving on. I’m attaching this webinar link incase you’ve not seen it from fnd awareness month 2020. It’s the least annoyed I’ve been by M Edwards and an fnd talk. If you agree with fnd etc. etc. I would continue to try and get help. Second opinion definitely. Good luck.
I'm the same leg shaking in the night with jerking movement but also experience leg shaking when standing & my fight for flight system seems to be on one all time & as for one happy hormone i ain't got any of them either so i'm thinking its the dopamine levels i'm lacking to! ..fnd related i dont kno because i've only heard of this condition over last few days drs said all my health ill symptoms showing signs of this fnd so wondering myself its they r linked 😐
You can take a Dopamine transport (DAT) test to measure your dopamine levels. My neurologist ordered one and it turns out my levels we’re extremely low. I was diagnosed with FND3 years ago by the mayo clinic and by Katherine LaFaver. At this point it’s we believe I have a combination of Efendi and parkinsonism and I am being treated for both. I’m still in the early stages of treatment but the Parkinson’s medication seems to be helping with some symptoms
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