Saw neurologist today for my brain MRI results. Confirmed results as normal , no abnormalities seen. Wasn’t shown MRI which I thought I would .
Diagnosed me with FND as symptoms not relative to any other neurological disorder. Been told no medication will help , it’s all in my sub conscious/mind and referring me to psychiatrist for CBT therapy.
Disputes I have Restless Legs but instead thinks I’m suffering with a sleep disorder as I wake in the night/morning with headache . He mentioned Sleep Apnea so referring me to have a sleep study. Refused any medication like Gabepentin to trial.
I’m still trying to process and digest it all , disheartened to say the least and no idea how much longer this will all take. Took a year half to get this far!
Has anyone else had a similar response to treatment of FND , sleep study and surviving without any medication?
How do you all cope on a daily basis, it’s really pulling me down daily but this forum I’m sure will help me to continue as best I can with all your support moving forwards
TIA
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Maynan17
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Hi, first of all, welcome, although I'm not sure any of us want to be here. Your journey sounds similar to mine, took 2 yrs and 2 neurologist to diagnose. The 2nd neurologist did show me MRI, here in Australia, it's put on disc and given to you. I found the best way to understand fnd, is that it's a software problem, rather than hardware problem like ms. The connection from brain to body gets faulty for some reason. My gp said once, I need a conference call to the rest of my body.
I also not allowed medication, although once able to trial Parkinsons med, Levodopa to stop jerking. 3rd neurologist put a stop to that. But fortunately, after ceasing the 2nd time, I've eased up on myclonic jerks.
It's about learning how to live with the new normal, but then I have multiple health problems, so goal posts constantly changing. You will find help here, ways to cope . Here you can let off steam , especially when family and friends have unhelpful suggestions. Don't forget to find a way to still enjoy what you can. Take care. Moni
Hi, Like you It took 19 months told I have FND and discharged, also have COPD(Emphysema), GORD and AO of the spine. My problems with FND are walking, talking and thinking. My diagnosis was actually spotted by my Neurophysiotherapist and she put me on a FND trial but that ended because of covid. Very disappointed with your doctor they should never tell you its in your mind that is so wrong gives you the wrong message. As your previous reply it is a software problem, I had to learn to walk again it's not 100% but it has plateaued at about 60%. I have not been able to do anything with my talking and thinking but one of my neurologist referred me to PPS(persistent physical symptoms) which is a holistic approach to FND we will see! I also suffer with sleep apnea but I was told it was because I stop breathing in the night( which worries my wife) and I have to be woken gently. sorry i don't seem to have the answers but you have to politely but forcefully get all the tests possible ask for PPSS you never know it may help you . As you know very one is different and needs different care. i hope you find some answers if i can help i will with anything i have including bletheritus (sticky eyes) , cubital tunnel(thats at the elbow and causes pins and needles of the two little fingers), suspected parkinsons( have a tremor gp spotted) pain(abdominal,chest and spine) and enlarged aorta over my heart. good luck. kevin
Hi nice to meet you and im sorry you also have FND. The neuro you see seems very Unprofessional and rude Which sadly covers half of them in the country. Ask for a 2nd opinion we which you are you are entitled to I and you are Entitled to see a copy of your MRI.
Hi Tia, (sorry this is long..) I was diagnosed with FND about 1 to 2 years after it all started back in Dec of 2008 for me. I was told by multiple docs that it was all in my head. To just get cbt as well. My symptoms started with a lost voice when I caught a cold. But the cold came and went, and my voice would continue to come and go. Sometimes several times a day, sometimes after a few days. Even now I still struggle with it here and there, 14 plus years, and many speech therapist later, but when I have it, it is strong again like before FND. Then after about a year or 2 , I began having a slight jerk in my neck/head on and off for months. Then one day I was at work and my hands became a little shaky. I thought it had to be low blood sugar. So I went to have my lunch. After lunch, the shaking increased throughout both of my arms wildly flapping around.. kinda chicken like. I could not control it for 4 hours. I was sent via ambulance to the hospital. The neuro doc eventually told me it was all in my head as well. So frustrating! Then months later it happened again for another 4 hours after being tired, out in the sun and lack of food or drink. But again it did stop. However a few weeks later it went big time into my head and neck, twisting, turning and jerking around, pulling my facial and neck muscles so tight it hurt. After that day, it became more and more frequent, and eventually spread throughout my body from head to toe, making it hard to talk, walk, sleep etc. My life had turned into a living nightmare. Myoclonic jerks, seizing up muscles as tight as they could go, almost total loss of voice, gait effected because my feet would twist and turn and drop me to the floor and more. Then about 2 years after the movements started, I began having what I thought were seizures. But MRI, EEGs, everything said I was fine, but I wasn't seizing during them so.. no luck. I went to multiple speech therapists, ENTs, doctors, CBT (many of which were nuttier than a fruitcake!) And also several neurologists. I even traveled almost all the way across the US to do studies at The NIH. My life was turned upside down. I had to leave my job of 20 years, and go out on short term disability, then long term disability. Then my company said they were done, and it took 2 years to get any government help. My saving grace was 3 fold.. 1. I never gave up nor did my family! No matter how hard my life had become, I had to keep trying. And if one doc or therapist didn't help, I went to another one. 2. Untill I was introduced to a CBT therapist that wasn't going to give up on me, or treat me like an idiot. I went to her for many years. 3. And then I finally found a Neurologist, who treated me the same as the therapist. She wasn't going to give up either. I finally had my dream team. I tried so many medications, EEGs, botox shots, voodoo crap, you name it I probably tried it. My Neurologist did another EEG and didn't find anything like the others, however many of the issues I experienced such as seizures would hit me worst in the night when I would lay down not during the day, so no wonder the EEG didn't show anything. So my neuro asked if I'd ever done a 3 day video EEG. It came back indicating I was having non-epileptic AND epileptic seizures. But in the end, none of us gave up. We finally found the right kind if meds for me, and now I am over 14 years out from when it all started, and I was able to go from normal to hell and back. I am not 100 % cured, but I have held down a part time job for almost 3 years, and this last Monday i started a new job to full time. My seizures have gone from 1 to 42 plus seizures in a day to now maybe 2nin the last year. My advise again is to not give up. Positive thinking even when life seems like it sucks the most, just think, it could be worse. I b pray that you can find some help like I did.
Hi, I was diagnosed recently but appears that I had a different experience. I have had for the last 10 years pain in my legs and ended up using crutches, which I was told initially there was no explanation to it. I then started to drop things without warning, problems swallowing plus short term memory issues. All results showed nothing then one neurologist saw me and after a few questions and function tests he gave me a provisional diagnosis and to look up the condition. This time he went through my MRI showing me sections and explaining the results. This resulted in a referral to our specialist team, the neurologist had studied at some time under Jon Stone in Edinburgh. I am still processing the information a little at a time.
Good luck with the future but remember from this low point the only way is up
Hi I’m sorry your diagnosis was delivered in such a way. I had a Traumatic Brain injury. ( TBI) I also found diagnosis puzzling .. I thought banged my head, now I can’t talk, walk, think with clarity. I was fortunate to access multi-disciplinary support as an in-patient at the Rosa Burden Centre in Bristol. ( your GP can refer in the U.K.) The combined neuro/physical approach enabled me to understand the condition. I am so much more able now.
I watched countless videos on U Tube and read as much as I could. Ultimately it seems we have to advocate for ourselves and re-wire neural pathways.
Here’s a link to a great place to start. Good luck! fndhope.org/
Hiya! I have just been referred to the Rosa Burden centre in Bristol. I have an ABI -Acquired Brain Injury (burst aneurism and brain surgery) plus numerous other health conditions including heart attack and emergency surgery, hip dysplasia and CPTSD and they can't seem to pin down why I can't lift my left leg. I also have absence seizures so the epilepsy team are involved too. I think they might be going down the FND route but I haven't been formally diagnosed as yet. Thinking of it as a 'software problem' is really helpful and I really push back against anyone, doctors included, who say it's imagined and all in our heads (which technically it is as a brain malfunction) but they seem to put a 'you have a choice' spin on it which it utterly disrespectful. Would they like to walk/hobble in our shoes for a week? I don't think so. I'm of the opinion that nobody can fully understand brain injury/malfunction until they experience it themselves an those professionals that do understand are few and far between.
What's it like at the Rosa Burden Centre as I'm anxious about what will happen? They are triaging my referral from my neurologist at the moment.
We are here to support each other and suggest paths to recovery that might have worked for us but don't work for everyone. We are all different and should all be treated with love and respect x
Hi, I'm so sorry to hear that you were given such poor advice and support at diagnosis. It really makes me so sad and angry that people are still given such poor care when they are clearly in a lot of pain and distressed.
I'm two years into diagnosis and I feel so lucky that I was treated with respect and given proper advice. One of the most useful recources I was singposted to by my neurologist was FND Friends. They are a brilliant organisation and run support groups both in person and online. They also have a great webpage about FND which clearly states it is not in your head! This is the link I now pass onto friends and collegues so they can better understand my difficulties and expereince.
Also if you are being referred to any kind of psychological support it is really important that they have worked with people who have FND before. I was lucky that my area have neuropsychologists as part of an FND mulitidisciplimary team and the support they offered me in the early stages of diagnosis was life changing.
I'm not sure where you are based but if you are in the UK, I would encourage you to make sure that your GP refers you to one of the FND specialist (I think FND Freinds would be able to help you find the nearest). With the right care and support FND can be managed but with the wrong support it can be extremely debilitating and isolating and you should not have to go through that.
Lastly I don't take any medication for my FND as my FND causes me to experience paradoxical side effects from many medication. But I have heard of lots of people with FND who have found medication helpful. Every case of FND seems to be very individual so it is really important to find out what works for you and your body.
Sadly many medical professionals still don't have a good grasp on what FND is so I find these forums and charities like FND Hope and FND Friends seem to be the best place to get upto date and lived advice.
sometimes low iron can cause RLS. Also antihistamines can aggravate it, or at least Benadryl, in my experience.
Occupational therapy and physiotherapy can also help with FND symptoms. CBT is helpful but you need support for your mind AND body - so they can get back into communication with one another.
Hello Maynan17. I was diagnosed yesterday after having MRI and nerve conduction test and GP sending me to A&E as things were getting worse and ascending up my body. Ended up being kept in overnight with various doctors asking why I was there!!! All tests showed I am normal - oh no I'm not! The consultant was very supportive though but I've been discharged from Neurology which made me feel like - well that's it, no where else to go.
I'm waiting for the sleep service to see me as I wake in the night, sitting up screaming that I'm dead.
I've got a balance assessment tomorrow related to my ears, but I wonder if it's more related to FND now.
I'm being referred for CBT but had that before and it was useless for me. Also being referred to neurophysio which I'm hoping will be useful.
I've downloaded a meditation app and it's really helping me in trying to relax with it. At least it's making me breathe as the stress of it was making me tense and holding my breath. Might be worth a try.
Hi I can relate to your feelings I saw a specialist at the rosa burden centre yesterday and have been referred to occupation therapist but told the therapy I really need which is to work through psychological trauma the NHS dont provide and I would have to pay for it myself. That hurts when I am unable to work and money is so tight and to the think the only thing they think will truly make it better they wont provide. It's such a cruel illness and so poorly understood it's so isolating. I hope you are ok and finding some small pleasures in life still as I know how hard it is. Hope one day FND can be understood better and we get the help we really need
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