My FND 6 months post Diagnosis  

I'm so glad i found you on RU-vid! Im having the same cognitive and gait symptoms. Two weeks ago, i had my follow-up appointment to go over all my testing with my neurologist. She said, "Good news, all the tests came back negative, and you just have FND. Your psychiatrist needs to get to the root cause of mental health with Cognitive Behavioral Therapy." She made me feel like I'm crazy and it's all in my head. I went back to my primary care doctor, and she recommended I see another neurologist so that I can get the support I need. I will definitely be following you. Thank you for being so open with your symptoms. Take care.

Thank you.. I am a 65 yr old college professor who has been dealing with the TIA symptoms for 6 yrs and previously as well... this is frustrating as all Hell and each day is a new challenge...I wish you all well and please enjoy every day... live, laugh. Love and pray... humor is a great spirit lifter😊

OMG!!!! Its like looking in the mirror, my eye drops, brian fog, the words are in my head but I can't get it out. I start & stop conversations as my mind goes completely blank. My memory & short time memory is poor. My speech goes slurry, then I stammer. Thee onset of the stammer is a warning sign as when that starts when my right arm & legs start shaking as if am having a seizure. My focus is affected. I already have M E. & Fibro, the fatigue is overwhelming. As well as FND I was diagnosed with Migraines. Every aspect of my life has changed dramatically, I was initially taken to hospital with suspected stroke, been diagnosed with FND April 2023. Thank you for sharing your journey 🙏

OMG I could be your twin sister in this journey! I am not yet diagnosed ( massive wait for urgent referral) but I have exactly the same story as you!!! My GP thinks it is FND, just waiting for my Neurology appointment. Thank you so much for sharing your story, you do not know how much your video has helped me.

Hi my daughter has been diagnosed for 5 years now. It's been so hard but fantastic to hear your take on how it feels. It helps me to understand more. She has not had an easy ride of it. Really hope your good days out weight the bad. Stay strong X

Thank you so much for being open about your diagnosis, your issues and symptoms. As well life with it. I just was diagnosed with it less than a week ago.

Thank you for sharing, I was diagnosed in October 2023 and still not really understanding it all. I had what seemed like a mini stroke late 2019 and it took until late last year to get diagnosed by a neurologist who was very blunt and didn't explain it at all, made me feel like I was making it up. I think we could do with more specialists. I too was a personal trainer and dance teacher, not since 2019 hard to teach dance with a numb leg and vertigo - I think that has been the hardest part, the loss of my identity. It certainly is a learning curve I am so thankful to everyone who shares their experience it has really helped.

Thank you for making these videos. I'm in Australia and live rurally. They have not even heard of FND here

Thank you for sharing your story. I’m so grateful for everyone who is spreading awareness. I’m not yet diagnosed, but I truly believe this is what I have. I unexpectedly lost my mother back in May of 2022, and I quickly realized a difference in my cognitive function and started getting severe chronic pain. I thought it was just the grief. By October, I had severe neck pain and started having vision problems and severe migraines. I would lose partial vision during these migraines. Got checked out by an optometrist and ophthalmologist, and did not find any issues that would cause that (retinas are good). I also started having facial twitching and tingling that would come and go. In January 2023, i was at work in a meeting and suddenly the left side of my body from my head down felt like it was going numb and had twitching. They called an ambulance because we thought I was having a stroke. They did an evaluation and some tests to see if I might have had a heart attack or stroke, but found no cause for concerns. The next day, I broke out into hives, felt like I couldn’t think straight, got a severe migraine, and my face was twitching/tingling. Went to the hospital. They couldn’t figure out what it was. They gave me migraine medication and allergy medication, I felt a little better. Over the rest of 2023, I dealt with so much hell and NO ANSWERS. The only thing they found was that my vitamin D was low. Took supplements and got my levels back up. Multiple specialists and thousands dollars later, no answers. They’ve tested and scanned everything. I’ve done mental health therapy and physical therapy. Those seem to have helped some but not completely. I still struggle everyday. Thankfully, I feel so much better than I did last year, but I still don’t feel good. My symptoms: (In my face and basically entire body) Migraines/auras Vision problems Vertigo Weakness Extreme fatigue and tired all the time Tingling Twitching Numbness Tightness Convulsions Memory problems and problems remembering words Mobility issues Chronic pain (nerve pain, muscle pain) Sharp pain in my head and legs. Sensitivity to light and sound Lower stress tolerance For a while, I also couldn’t tell when I needed to use the restroom or tell if I was hot or cold. I would just start feeling a tingling at the bottom of my spine and realized that’s when I needed to use the restroom. I also have HIVES!!!! chronic horrible hives but have been tested for ALL autoimmune diseases and allergens. Antihistamines help. I wonder if there are others that have had hives too or if this is just separate and due to stress. I don’t know. But it’s horrible. I genuinely thought I was dying last year and started getting my things in order just in case. It was traumatizing and also horrible just not knowing what’s wrong and everyone telling you that you have nothing physically wrong when YOU KNOW that something is wrong. These past two years have been the hardest years of my life. I am discussing this with my therapist next week and have a follow up scheduled with my neurologist in may. I hope that I’ve finally found answers, but I wish there was a cure. I hope we all find healing. I wish you all the best on your journey.

Totally hear all your recent unexplained plight -I’m newly diagnosed within a few weeks and can totally relate to everything you’re saying -and it’s exhausting to try and explain to others so I really appreciate your efforts to convey the whole essence -of what you’re having to face through all this -it’s very real and believable and I suffer too from all that you mentioned As I suffer hemiplegic migraines as well -thx so much for sharing this it’s nice to know there are others who can sympathize and that we’re not alone through this difficult challenge-I’m still trying to process this and wanting it all to disappear so I can get on with my life but reality is it’s not going away -something new to have to wrap around this and try to do the best we can each day and appreciate our dear family supportive efforts to help us through -thx 🙏💕

I was diagnosed October 2021, 4 weeks into a traumatic Covid experience. It's been extremely hard, not just with the symptoms but in understanding and getting my head around what FND is! I've just completed an extensive inpatient rehab programme for my FND. I learnt that the brain has a way of protecting us from trauma or stressful situations that isn't fully understood but there is research to show that vessels carrying blood to the emotional parts of the brain are flooded whereas to the mobility parts restricted. This causes distorted signals from the brain to different parts of the body, eg limbs etc. The distorted signals take the long route around which in FND is what causes the fatigue. I learnt that my normal pathways were still there but imagine those pathways covered in grass, so the signals to these pathways take a different route. I worked with my therapist's to get under the grass and remember the old route/pathway that is still in my memory. I'm sure I finally got what they meant when within 2 weeks of being there I walked down the corridor normally for the first time in nearly 3 years, it was like a miracle. I felt like I could use the technique and tools I learned to literally tap into my remembered walking ability. My symptoms are a kind of bopping gait just to move one leg in front of the other, totally debilitating and strange, constant large muscle jerking, tremors and shaking particulary in my left arm but can be all over. I woke up with a foreign accent nearly 3 years ago aswell and I also slur, stutter and have strained speach when relapsing. The fatigue feels like my whole body shuts down. I have a long way to go but armed with a better understanding and some tools and techniques to manage the disorder, it's now up to me to keep moving forward and progressing, but it's hard. Breathing techniques were a must for me in all areas.

I've just been advised that My symptoms are probably FND related...You symptoms are very similar to mine, I find the leg tremors and speech issues my biggest issue, It's just draining and frustrating. Thank you for your videos it's helped me start to understand my symptoms.

I have it also. Hard life. But so recognisable! Your symptoms are just like mine! I will follow you and it’s unbelievable difficult! I have the diagnose also a few moths. Treatment until 14 weeks starting. But exactly your symptoms! 😮

THANK YOU CHRIS🤗THANK YOU SO MUCH💕Im a month in, and I feel so confused and alone and needing so much to hear someone else, I'll be subscribing, following anytime you are up to sharing... THANK YOU FOR YOUR HONESTY ❤

Thank you for posting, I’ve had FND for 8 years and you describe it perfectly 🥰

My symptoms started with my eyes, thank you for sharing your story. It’s like you are telling my story.

Thank you for sharing. So much of this resonates for me too.

Thankyou for sharing your story and for describing FND so perfect. I too have FND and like many others who have commented feel you have told our story too. Take care 😊

I've been diagnosed for around a year and dont drop to the floor but the other symptoms you mentioned, yes. Cognitive issues, eye problems (sometimes focusing, sometimes auras), severe fatigue and speech issues (slurring, stuttering, unable to get any words out on really bad days). I really resonate with what you said about not wanting to say anything to your partner because there are so many different random symptoms that come and go all the time apart from the main ones. The only thing i have that you didnt mention is i often have severe sensitivity to light or noise now, lower pain threshold and occasionally limb paralysis (usually my hands)- then again i was told these were non epileptic seizures so maybe the same as you but i don't fall down or shake. Theres a trick that gets my limbs moving again that i found so its not as scary anymore. I wish you well on your journey.

Everything you have mentioned about your FND is exactly what I have been going through for 2.5 years. Good luck with your own journey with FND and keep the videos coming 😊

Hi, thanks for posting this video. It is so affirming to hear someone else with similar experiences and symptoms and also to hear you vent! I am just in the diagnosis process at this stage, so not 100% sure it's FND. I still have nerve conduction studies to go, but my GP thinks it's looking like FND. I can totally relate to the cognitive problems! Getting words out, memory, mangling words when they do come out. I also have issues coordinating swallowing sometimes. I also have a very physical job as a music tutor/musician. I am just managing to hang in there tutoring, but any live gigs are out at the moment. And yes for me, my music is definitely a go to for a mental health boost as well as hiking and kayaking. It's pretty hard to lose those joys, although I do occasionally manage a short kayak or short walk from time to time. I have lots of numbness in my limbs and fingers/toes - not good for a musician! No seizures, but dissociative episodes and spasms and cramps, mostly in my legs and feet. I have eye pain in one eye, and problems moving that eye when I am tired. It really is exhausting, just trying to get through a day. Wishing you all the best. 🎵

D@mn!!! you sound like me!!!! The difference that I have an official MS diagnosis. It was 16 years ago. Also I'm a 50+ years old lady 🙂

I really feel for you. I have ME and POTs which has caused some similar issues to yours. I used to do ironman, ultra running and outdoor sports. Now i am mostly housebound and have given up work. I hope we both manage to get some of our lives back

Hi Chris. My daughter has had FND since March 2020, right before lockdown. Hers started as a panic attack that turned into severe tics (I believe hers was triggered by anxiety) now she has all manner of symptoms. Some of her mental symptoms are really scary, de realisation, dissociation and still severe anxiety and depression. She has intermittent paralysis of the lower half of her body. Seizures, loss of hearing, loss of voice… stuttering and tics. Yes, my daughter has constant vision problems. Bladder and bowels problems. Also, I’ve noticed if she is ill for example with a virus, it will trigger a lot of FND symptoms. It’s an absolute mine field However, I started her on a pre and pro biotic as your gut microbiome sends messages to your brain so maybe they can help support her? And I also give her a Vit d3 and magnesium supplement. It makes a difference to the severity of her symptoms for sure. And you’re right about anxiety being a major trigger which she has therapy for. I hope you are doing well and if you are not, please don’t give up hope. You’re not alone

I’m about 3 years into this FND journey. I’ve come to the point that I can barely talk, it’s so frustrating & depressing.

Newly diagnosed. Finally an explanation for my seizures. I get auras then a fit Brainfog n other cognitive probs. Used to be proud of my memory! Am widely read now I don’t remember a book I read yday. Hard to accept (getting there) Thanx for doing these vids Ps I totally changed my diet n things are better The terrible vision issues …it was like I looked thru vaseline. Hard to read or concentrate on my photography. That was the hardest. Now either cutting out sugar, processed foods n wheat that’s cleared up!!!! The chronic fatigue has let up. I still can get super tired but it’s not like a black cape coming down weighing heavily on my shoulders Please do some research for urself about gut health n cutting out the stuff I mentioned. But yeah FND. Hard to explain to others isn’t it….

Informative video thank you so much for sharing. Just was diagnosed this week, however now that I know the symptoms I think I have had FND for many months. It only became an issue when the tremors and jerking started.. I’ve struggled with fibromyalgia since 1997 but now I’m trying to digest all of these new symptoms and how my body has to adjust. I am feeling so very overwhelmed. I can so relate to the hearing issue and omg the vision issues are so hard to deal with. My symptoms are so erratic I think did I really feel this yesterday because it changes so much. I also can be trying to have conversation and I get stuck and a feeling of panic overtakes for a few seconds, and I have to think what was I just talking about, what was the point I wanted to make. Have you had the seizures from the beginning of your diagnosis. I feel like my brain gets stuck a lot and I’m off staring into space not really thinking about anything but just lost. The fatigue is so hard I feel like I’m sleeping my life away.

Hi Chris! I'm a fellow FND 'person' (I'm not sure I like the word patient or sufferer!). "There's lots going on" resonates with me in every way. I've had major symptoms since 30 years ago (but probably had it mildly before then). I've just been discharged from St. George's after 11 years with them - the letter says 'FND in remission with blips' (I love the highly medical term: blips :) ). Well done for sharing your story and journey. It's an exhausting condition and there is so little awareness of it. I've been lucky to have stayed in work throughout, but I completely get the stiffness, "walking like a robot" (I used to say "like a marionette"), dizziness, cognitive difficulties, etc. My speech has been very bad but isn't too bad at the moment. I also used to say "like wading through mud", too. I have a bad tremor on one side. I hope you reach an easier place soon. Sending lots of love and empathy x

Face droop, anxiety, numbness and tingling etc caused by chronic hyperventilation. Slow down the breathing and it allows oxygen to do its thing with the help of co2. Anxiety feeds the pronlem and then blowing off too much co2 keeps the cycle going.

Hello Chris thank you so much for your videos. First of all I would like to say how strong and brave you are to share your story. I myself used to be a very fit ex forces marathon runner etc. last September 2023 I had what I can only describe as a panic attack before hand I suffered with fatigue. I am now in the process of getting a diagnosis for M.E CFS. My symptoms are a mirror image of yours although I have not had a syger. But starting to get the shakes on my right side arm and leg I have started using a crutch and knee supports as they seem to help me stand for longer. I have to see a neurologist in 10 days time as I'll be checked for NFD. But your video is always my life I have a young family as well so thank you so much you have really helped me as I have been feeling very low and alone with it all and like you I could wish for a more understanding family God bless you Chris and thanks again I'll keep you posted.

Thank you for sharing. My 41 yr old daughter has fnd. It's a difficult disorder.

This is scarily familiar and I think you hit the nail on the head with the descriptions. Do you have any recommendations for FND physio exercises? I am on a list for FND physio and neuropschotherapy- this is currently at 2 years, I’ve done 1 year wait so far. Thank you Chris. So much x

Hi, Chris.I have come across your video on RU-vid.Because today I have found out that I suffer with conversion disorder Which is another word for f.N.D I have trouble walking. Sometimes I have trouble getting words out properly even though my brain know what to say it come out completely wrong. I also suffer with ticks as in jolts. All of my body. They are very bad night times My left hand side of my body aint as strong as my right hand side.

Chris,have you tried myofascial release? the myofascial is in every cell in the body, can heal most everything. I found one that I'm just starting with and doing some visualization on my own also, after watching John F. Barnes. His video on you tube is called "a word with John F. Barnes." start at 13 min for the gist of it. He's so comforting, loving, and caring too. I found it by accident. I'm hoping it helps my severe neuro symptoms of 16 mo. I feel for you as I understand what feels like torture at times. Hardly any of my family comes to visit me, or sends a get well card (I mean not that I really look for a get well card) because people just don't acknowledge brain issues like other health problems. I wish you well and will pray for your healing. Lots of love from someone who's been through it and still is.

Thank you for your video. I have all your symptoms except for the frequent seizures and hearing loss (but have other ear related issues). Been suffering for many years and first went to GP for help around the age of 25. They systematically played down my symptoms and patronised me to this very day. Symptoms have gotten progressively worse over the years. I'm now 39 and have been decidedly robbed of my life by the nhs. Been told it's in my head, just get on with it, and treated as if I'm lazy. Through my own research came to know all this have at least something to do with severe Magnesium and B12 deficiency. I don't know if you've looked into that? I'm taking about 2000mg Mg a day now. It has helped alot. Also helps vitamin D in the body do its job. Haven't started B12 yet. Anyhow wish you all the best.

I got a diagnosis in January I have been suffering from this for the past 10 years.ive had attacks on trains and have to drag myself of the train because I was paralysed.i suffered from disability for 15 months.every time I went to hospital I hav e been sent home with no answers the junior doctors all have look and multiple times have been sent home paralysed I feel like my life has been taken away from me doctors and nurses think I'm putting it on because it resolves sometimes.my toes and fingers contort for no reason I feel every emotion that you feel.the first diagnosis was hemepliegic migraine which I do have. I have cannabis and it relives some of my symptoms but when I don't have it all the symptoms come back with vengeance.i even had a procedure to close a heart murmer and a hysterectomy to help symptoms.Not enough is known about this condition. I have had no help from Australian health care or benefits unfortunately because I'm married,any disability doesn't exist in the eyes if australian government. I have been treated very unfairly and wish I could of found out about my condition from nhs when I lived in uk. I feel your pain and actually I don't feel alone anymore after seeing your video keep up the good work.xxxxx

My symptoms came on eight years ago, with what seemed like a mini stroke on my right side. For a long time it came to nothing and I was fine. Then one morning, four years ago I woke up blind in one eye, which lasted three days, after that, in no particular order, fatigue, light sensitivity, migraines, leg weakness, knee buckling, pins and needles, numbness, tremors, head wobbles, eyes rolling, tinnitus, cognitive issues, slurred speech, now, five years later, I can't walk further than a short walk, sometimes I can only get around the house. Of course depression set in and anxiety, I do work from home, and love my job, my husband has been brilliant, but I can't work for very long. I've now started to experience seizures too, so going out less and less. My symptoms used to remit and relapse, but I basically have them all of the time, some days are better than others. The fatigue is the worse tbh. I think the hardest part is friends starting to trail off. I can't make plans any more as I don't know from one day to the next how mobile I will be, or how I will be able to keep up with a conversation. FND is so poorly understood and I have had some very negative responses from medical staff. I'm due to go to hospital for a month in London, to finally get the help I need. Keep pushing, keep fighting, it's a tough road but there is help available on the NHS in the UK. Hope this helps Xxx

I'm so sorry that's really tough.FND has a horrible ripple affect into different areas of your life. Are you managing to get some help from any services ? Know it's a battle with this diagnosis. Sounds corny but your not alone honey. Wish I could make it go away for you. Have you ever gone to a support group ?

I have FND and a medical massage therapist..

The talking thing is part of cfs

Thank you for sharing. I have limb and face spasms but not seizures. I think my pregnancy started it off. I have a theory that adrenaline plays a part for me as does looking into the far distance, peripheral vision and looking behind. I am embarrassed by my face spasms and tongue spasms as I sound like a cow lowing and can't communicate. At those time my hearing becomes very sharp. I wish you well and hope to follow your story. All the best.

Hi there I also have fnd first diagnosed March 23 been a hard year struggle to walk nerve pain is so hard i get nerve pain in my mouth on a daily basis its like someone drilling my mouth

Yes yes yes ! Thankyou for sharing all my symptoms too..I have some demyelation so thought it was MS I have have white Matter lesions and half MS lesions since MRI March 2023...but now Super specialist in MS Neurology thinks it's FND ! Do you get electric shock through tongue or throat ? Take care

Are you taking any prescription medicine? If so, Have you looked into deprescribing and trying 30, 60, 90 days of beef, water, salt to taste ideally real salt vs table salt? I wish you exclusive results. Carnivore will work

I was diagnosed with dnd in 2021 and it's so hard to live with. I have similar symptoms as you. I recently have had drop attacks to where my knees buckle and I'm down.

Also ime looking qt cci and lymes test as nhs test are inaccurate

Has anyone had tests for MS with neurology because the symptoms are so similar just without physiologically visible causes? I have FND with ME and my neurologist feels that trauma and stress is the root, but I do have pain which they say isn’t a diagnostic of FND? Thank you x

HI ❤ I have the same thing 😊😅

Newly diagnosed. Body had been glitching for last 8 days, like throwing fits while i am awake. Spent last week in a hospital and diagnosed with this. Got home and took some cbd and hhc drops probably overdone it as never used them before. Was a bit 'stoned' yesterday but the ticking has stopped for almost 24 hrs now. Still lightheaded but was before hand to but nice to het some repite from the body ticks.... My question is this. Are the symptoms likely to get worse or change to more severe ones? How can i cure or manage these conditions... Has cannibus extracts helped anyone else?

Did you have a covid jab and if so, when?

Do you have hypomobility.ime diagnosed decdes cfs fybromyalgia with elements fnd but at 43 ive found out i have heds autism adhd causation