Episode 3: Lorraine and Functional Neurological Disorder
Vložit
- čas přidán 16. 06. 2024
- In Episode 3 of the I CARE FOR YOUR BRAIN with Dr. Sullivan Podcast, board certified neuropsychologist Dr. Karen D. Sullivan and our guest Lorraine discuss her journey with Functional Neurological Disorder. Listen as Lorraine describes her struggles with symptoms and diagnosis to learning to cope with the disease progression and trying be more accepting and understanding to still live her best life with FND. Learn more at www.icfyb.com
You are so compassionate Dr Sullivan, you are such an amazing person. Thank you for sharing your story Loraine. This is so helpful.
We are thrilled to be able to share our expertise together! Thanks for listening!
I'm a 50 year old male.
Had Fnd for 16 months and what's helped me is taking responsibility for myself.
The GP and neurologist have been brilliant...but there is nothing more they can do.
What has helped me is doing lots of learning about Anxiety, Trauma and the brain. Also read about the immune system and how it relates to our thoughts and gut health.
Been in counselling for 6 months, had a little EMDR too, and finally feel like I'm getting back to normal.
I've even started to feel a bit embarrassed about the last year and have been wondering wtf happened.
My advice is to slow down, relax and focus on positives and really believe in and take care of yourself.
I also quit the support groups I was in...they were good but it got to a point where it was time to let it go and focus on me
Is there anyway of contacting u cos icl this comment has helped. Im struggling to manage this FND and was wondering if u could give some advice to a young person.
@nicoreblimey yeah you just contacted me!
I can't help anyone, I'm not qualified or experienced to do that...and I can only say what helps me...I've come on a long way since my original comment.
What I do now is yoga, meditation (joined a group), swimming and being in positive company and feeling safe.
@@RunPJs 🙏🙏🙏🙏 blessings
@@RunPJsdo you have heds hypomobility I have fybromyalgia with elements of fnd which all same brain symptoms
It’s so refreshing to hear intelligent informed conversations about the mind, emotion and body. I don’t have FND but I have a family member that we have taken care of and we are now at the point of having conversations with her about discussing FND with her doctors. It’s something that I personally have observed and spent 2 years of researching so I am grateful to learn how to be compassionate when even bringing the possibility up. Thank you
Hey Dr Sullivan, Lorraine, I would like to add in on the conversation.
In September of 2001, after a very long day and week at work, I collapsed while at the kitchen sink, and was dragged off to bed by my wife and children. I spent the three day weekend in bed where I lost vision in my right eye for the better part of the day, had right side weakness, loss of coordination, tremors, extreme fatigue, and other symptoms.
When Lorraine said that it was like a line drawn down her body with weakness on the left side, I just about leapt out of my recliner because I had a very similar experience.
My line was dividing my body vertically with numbness and weakness on my right side, and the left side was "fine".
I began to tell the numerous doctors and other interested/concerned people about my jello (gelatin in the UK) analogy. School jello vs home jello. School jello is quite firm and when you press your finger into the jello it is as if you poke thru it; the pressure is very pointed. That would be the left side of my body.
Home jello doesn't quite set up the same way as school jello. It is more likely to spread the pressure out to a larger area, dishing in so to speak. Home jello was the right side of my body. 22 years later, I still feel the same, it has been worse and it has been better.
I first heard about FND a couple of days ago, and I've been very mentally engaged since then.
Thank you!! Finally I feel that I have a life line!
A lot of this sounds very similar to my situation. My doctor has sent your office a referral. Praying I can see you soon, Dr. Sullivan. Thank you for doing these videos. Thank you, Lorraine, for sharing your experience. It will help a lot of people.
Currently having horrible symptoms. 10 months in. Twitching, cramping sensations, vibrating, pain, pins, heat sensations, horrible exhausting fatigue, cognition issues (memory, difficulty keeping attention). All my tests have come back normal (thankfully). I keep going to catastrophic thinking and it’s so hard to get out of it. My busy life has stopped, not to mention I have young kids. The battle has been is very difficult. Don’t know where to go next. It’s the worst when people mention stress as a cause and say stay out of your head. Really? I’ve been stressed I work in the medical field and kids at home. This isn’t just stress. This feels debilitating and hopeless. Get tossed around from doc to doc for a few minutes and your brain can’t even focus to get out your whole story, you leave with no answers. Any advice would be greatly appreciated. I’ve tried audiobooks, relaxation videos, but the thought of not being able to work after years and years of school just brings me so down as I have a physical high stress job. Sorry for the rant. Have a wonderful day and life
Hi, I am just in the process of watching this video and I found your comment. Whilst I'm not disputing any thoughts you have on diagnoses, the symptoms you listed perfectly fit Fibromyalgia/ME (CFS), which I was diagnosed with over 20 years ago. I was also recently diagnosed with Dystonia, a Functional disorder (in my case), hence I'm watching this video. I hope you find some answers and ways of living with any diagnosis you may be given.
@@singingsam40do you have heds autism
I'm enjoying these more personable one-on-one's. Thank you Dr Sullivan for this channel.
Omg, Lorraine you are the first person I can relate to with my symptoms except down my right side. I can't believe I have come across this video it's been so helpful to watch your discussion. Thank you so much. Good luck with managing your illness.
I'm in the UK & was EVENTUALLY diagnosed with FND for 4 years severe tremor now. The state of this area in the UK is SHOCKING. You can not get help. I just got back from a Neuro Centre appointment today, and basically, I don't qualify for the program as my case is too severe. To the UK lady. Ask your GP for referral to Neuro Physio, OT for home needs adaptation needs and social for carer assessment. If your doctors are still not helping, contact PALS who will independently investigate your current case and move things forward so you have someone in your corner, so to speak, that can put things in place. I feel for you it's so frustrating and makes the condition worse
Lorraine -thank you for sharing your story. I'm sorry that you had to go through that experience, but I'm glad you're getting the help you need. I'm in the process of being diagnosed and it's so overwhelming. The information I've learned from this podcast and Dr. Sullivan's CZcams video on FND has been extremely helpful. I'm not 100% certain I have FND, but at least I'm educated about it and can advocate for myself if I do receive the diagnosis.
Hello, I am based in the UK and currently do not have a diagnosis but being a nurse and doing so much research after starting to have major issues with my health 4 years ago down my right side that I am now having to use a wheelchair!! I can so resonate with your discussion and would love to speak to one of you. I have asked my neurologist if my problem could be psychological before hearing about FND and now I’m convinced this could be my diagnosis but struggling to work out a way forward. Many thanks for creating this video ❤
I am 42 and was diagnosed with FND last month. This woman is so brave to talk about this. My neurologist diagnosed me right away although I had to push my Primary to get me an appointment. I’m glad I did because this is a scary thing to have when you don’t know what it is. I have left side issues also and numbness and tingling throughout. I’m trying to do my best to help family understand what is happening. They have been wonderful and good support and a good therapist are keys to this. Sorry to go on here, but resources and videos like this are so great. I’m also a Christian and trusting that God is still in control of my body helps me each day.
I’m 63 years of age and have had this condition for years. I found myself in a wheelchair and using a walker last year when my I kept falling to the ground without warning. My Neurologist finally gave me a diagnosis to help my husband and I to understand what had caused me to be in that situation. Knowing doesn’t help when you are on a Public waiting list for help however I do appreciate your sharing this information to help me/us better understand and hopefully manage my condition.
Happy to have found this. FND abnormal movement and symptoms since Oct 2022
Your story is very much my story. I’m at the point of investigating FMD. I’m already convinced. I went to the Emergency Department with heart concerns. In the waiting room, all my limbs dropped. The ED physician evaluated me for numerous things and couldn’t find a reason for it.
By the way. My heart is fine.
I didn’t think much about the day until 9 months later when I received a letter denying disability benefits. One reason for denial of benefits was because the doctor characterized the limb paralysis as seemingly voluntary. I’ve lived the last 5 months in hell as I get ready to appeal the decision in a state hearing without any representation. I’m rather scared.
I’ve lived the last week with more hope after my neurologist and GP have connected and set up a referral with a psychiatrist to discuss FMD.
Your videos are amazing. I have fibromyalgia with essential tremors and the rest of its package of symptoms. However, because it is an invisible illness, I’m adding isolation and Loneliness to the list of 200+ symptoms. Your videos help relieve me some. I have hope.
Craig, I'm glad you are here. Look at the criteria for FND and see how you can consider your symptoms against those criteria and bring that with you to the appt. I hope you find understanding and answers.
Do you have hypomobility I have CFS fybromyalgia 26 years since a fall pelvic pain.ive had pots elements of fnd essential tremor has gone pain worst symptom found out I have asperger's ADHD heds causation to this but drs don't tell us
Thank you Doctor Sullivan for sharing your wisdom and knowledge. ❤Thank you Lorraine for sharing your experiences with FND. 🥰
Thank you for getting information and attention for FND. I, too have FND. I've technically had it for 3 years but just got a diagnosis in February. I can relate to a lot of her story, unfortunately.
Most of my symptoms start on my right side. It started with my leg going numb, and now my whole body will go paralyzed, and this happens more often unfortunately.
Dr. Sullivan, I reached out to see about getting an appointment for my sister with you. We are located in NC also, however, it sounds as if she is not eligible for your services due to age. My sister has had an FND diagnosis since early 2021. She is only 43 years old and now completely disabled due to nonepileptic seizures. Approximately 5 months ago her seizures started to cause subcutaneous emphysema and it’s been a rapid decline since. She has been in the hospital off and on 3 times in the last 6 weeks due to the swelling in her face and chest and required intubation due to the swelling. This weekend she was discharged from the hospital with basically only saying “we don’t know anything else to do to help you so you have to leave,” which is terrifying. Her primary care has sent a referral to your office and if you’re able to help, even to advise her where to even go,
we would be so grateful.
Lorraine, thank you for sharing your story. It definitely helped me feel less isolated!
I was recently diagnosed with FND/FMD after roughly three years. It started in 2016 really, with right leg weakness and some electrical sensations. In Dec. 2020 I had a wave of tremors wash over me from head to toe, I suddenly felt magnetized to the floor, I couldn’t lift my legs. I was helped to the couch and then couldn’t get back up. I was partially paralyzed for 2 weeks, then had slight improvement but muscle weakness from head to toe, neuralgia of almost of nerve in my body, tremors, spasms, diaphragm spasms/chronic hiccups etc. I’ve lost my independence and now live with my mother. I also have been fighting to get disability benefits which is crazy because I can barely walk and every movement is difficult. Speaking is also challenging because my throat muscles are involved as well. I have had NO income for 3 years and that has added a tremendous amount of stress on top of the physical disability. I felt so alone on this journey. Now that I have a diagnosis I have some hope. To anyone who is still searching for answers…please don’t give up. There is help out there. You know your body better than anyone else. Be your own advocate. ❤🙏
Do you hav fybromyalgia symptoms
It was a pleasure to watch this video this afternoon..loraine your story relates very closely to mine and Dr Sullivan your very compationate.
Her compassion is refreshing. Thank you Dr. Sullivan.
I had a severe head injury while on active duty in 1978. I've had most of the symptoms mentioned in this video. I've seen doctors notes in my VA file saying that I was a bad patient because some of my some of my symptoms weren't characteristic of head injuries.
Ive asked my Neurologist to put me in as an Inpatient for 4 weeks into like a spinal/body rehabilitation program inside a hospital setting to try recover, he said id make a good candidate, for this so im waiting on Neurophysio 1st telephonic consultation in the next 2 weeks & i can only hope they say yes as i feel this is the only way my body will function again, with proper experts every day in movement & with this my mental health will improve as u get better & more able, i think this should be a big attribute to put inti the famework of healing aling with holistic therapies....
Enjoyed listening. You’re so soothing, healing.
So glad you have this channel❤ I have access to therapy, however, it’s so hard to go to it because it’s so far away. I wish there was therapies closer to home. We need more places available for those of us with this condition. My symptoms ebb and flow. Her story is such a great example of the medical system doesn’t support us. I have Hemiplegic Migraines and Chronic Migraines on top of the FND. I have a lot of past trauma, so dealing with this is complex at best.
I was diagnosed with fnd in august 21 and given 2 websites to look at and thats it again uk drs I live in Guernsey Channel Islands with no fnd support at all😥 totally relate to the lack of care and understanding! Left to just get on with it😥 also found i had a pineal cyst again told its just incidental!!😥 feel lost and alone tbh.
Hi Cathy, am so sorry you've been struggling alone and hope you've been your way through diagnosis. Sending you lots of love ❤️
This was absolutely beautiful! I have FND and watching this gave me so much hope!
Good afternoon Dr Sullivan from Arizona, I've been seeing your show since I found you, seeking help with ptsd, I think your great
Thanks Larry, I appreciate that. I'm glad you are here.
I wish you were my doctor❤ thank you
Me too ✋️
Dr Sullivan
First of all thank you so much for sharing your experiences and evidence.
Lorraine, I have been through a lot of experiences that you have, like a letter in the post and the GP not knowing anything about it.
Just one question I have?
I suffer with twisting of the tendons and muscles in my fingers, hands, legs, feet and my toes.
Do you know if what I go through is fnd?
Because the neurologist said that it is and I have twisting of my neck, it is like being in a horror movie my head doesn't go right the way round to my back, though it twists moving from one shoulder to the other and just before and in between it going on, my motor in my head at the back was revving up like a car motor. (This has only happened once so far).
I just wondered if you would possibly know what it is.
I would be very grateful for any information that you may have.
I will look forward to hearing from you.
Best Regards
Miss Jacqueline Beynon
Thanks for an excellent conversation. I have recently been diagnosed with FND. My symptoms began a few weeks after my 1st Astrazeneca jab 18 months ago. Can this AZ vax that has now been banned in several countries, be one of the trigger factors.
My sister diagnosed with FND a few months after her first dose of Moderna in January 2021. It’s been 3 years of hell 😢
Its so different to explain to others if your in a conversation & they ask whats wrong & i say i have fnd , but i cant explain it in a way that people dont just look at you as if your putting it on,it affects my full day/night into my sleep that my brain keeps telling me noone believes me, its a horrible shameful disgusting feeling i get & i cant explain it ?
What would treatment even look like?
What can be done?
I have PTSD from years of abuse and I have been diagnosed with conversion disorder and fnd. I've had 11 seizures. I have no TBI. So no one knows how I got fnd
I started have sudden chronic migraines 24/7 about 15 days post 1st time very mild covid infection that only last 2 days. About 8 days post covid had extreme brain fog and forgot groceries bringing them in and other things. Headache sudden then lead to tremors seizure like episodes when pain over 8. One dr say fmd other hemiplegic migraines. The thing it migraines rescuse meds and botulism works so not sure why ome diagnose fmd. Maybe the extreme pain can bring about fmd but im not having these with normal activity and even with extreme stress I have no tremors only when a migraine gets that 8 plus level.
I think this is me.... I'm ridiculously sad about the fact I don't know what the bleep is wrong with me. I went from normal 34yo to basically disabled.. the fact that others think this is in my head makes it so much worse.
Having FND. It’s a hard life talk to me please. 🙏 from Holland
From what I ve observed so far, once FND diagnosis is made, all new symptoms are attributed to it. Providing FND is commonly confirmed without any MRI or any other scans, it is really scary to be labelled with this. Has anyone diagnosed with FND gone through a comprehensive investigation and has normal MRIs, EMGs, etc?🤔
I've had normal MRIs lost my mum.ti severe ms last year we both.have had heds and Asperger's diagnosed late pain fybromyalgia worst for me
Hi I had a back operation in October 2020 and about 2 months later I couldn’t control my legs and couldn’t walk but it only happens for about 15 minutes then goes back to normal and it only is for about once a week and this is the strange thing only on a Saturday I’ve been asked what do I do differently on a Saturday the answer is nothing different I’ve just been diagnosed with FND
I have a leison on my frontal lobe and Syringomyelia. No one seems to care about the lesion. Two neurologists so far have said FND, neurosurgon said my walking issues was do to the syringomyelia. I have no idea whar to think. I also have hEDS. No testing besides MRIs and an EMG on my legs which showed missing SI reflex. I seriously dont know what to believe.
I know this is coming for me too. If I were you I’d listen to your neurosurgeon. I got bulging discs and stenosis being labeled as to mild to be symptomatic I know my back is my primary issue not FND.
I also have FND, more than 9 years now. Mine was provoked/augmented by medication rare side effects. I still am not getting any treatments to improve/stop deterioration of symptoms. My life quality is horrid. Labels are not enough, we need recommendations on treatment plans and then actual support. Unless you’re a billionaire, you’re out of luck.
Do you have fybromyalgia symptoms with it
That is me😢
Also in the uk. There is no treatment pathway for fnd on the nhs. I was diagnosed and given the fnd hope site to look at. That's it. Gp says I'm managing by myself and carry on doing what I'm doing. I have no life. I am virtually housebound and unable to properly care for myself. My council has gone bankrupt and no help for care financially available. Learning what I can online so I can help myself best I can when I can. I'm so exhausted. By accident during a dental issue a parathyroid adenoma has been found so seeing endocrinologist this week. I'm hoping the exhaustion is hypothyroid then at least there's something that may help.
Have you been checked for heds highly comorbid myself inc
@tomsale5142 how do you get checked ? I used to be hyperflexible but I'm quite stiff now as I've seized up. Is there a specific test I should ask my gp for or a specialist I should see?
@@cannymoose I had to go private London Dr Mittal GPS hope less it's linked to Asperger's for which I have list my.mum.ladt year to severe ms heds.niw son's diagnosed autism ADHD to but drs don't tell us we have to find ourselves also check out rccx gene theory.even Dr beard who called it neurosthenia had autism to I've had CFS fybromyalgia with elements fnd 26 years since a fall fybromyalgia worst symptom
I have FND my main symptoms are left sided leg movement which is mainly in the thigh area .it stars toshack and evenly moves up to spasms on my body and finally violent head movement arms flayling no control last between 1 -20 seconds then just stops feels like im plugged into the electricity mains and someone switched on the current then off again also have body spasms that can lift my body off the bed and thro me sideways leaving me slumped and abdomen contraction like holding your stomach muscles in slowing tightening then after several seconds releasing find it hard to breathe whilst this is happening has anyone experienced this and help me pinpoint my FND issues desperately seeking answers.
My primary doctor a couple of years ago told me the seizures were called pseudo for a reason. They were false seizures and there is nothing wrong. That I am in control of them and that I needed to figure why I'm doing it.
Wow. Poorly informed doc! Please seek the education and support you deserve.
That's shocking, seams like everyone with a fnd diagnosis is dismissed
Please be careful when explaining the attachment issues in early childhood with parents. This is walking scarily close to Kanner’s refrigerator mother syndrome when diagnosing causes for autism. As a parent of both an autistic child and and child with FND this can be a very triggering and traumatizing to hear. I can promise you our children have been very loved and cared for. I understand that attachment issues cause trauma but rephrasing this might be helpful to loving parents who are trying everything to heal their children.
Fnd is linked to autism imeblate diagnosed 43 with heds to 26 years CFS fybromyalgia fnd symptoms it's neurosthenia I thought I had ms after losing my mum last year to severe ms I've been looked after so well to its the autism in my maternal side I can trace autism back to 1850
Can this interact with your emotions? I find im constantly crying & unable to stop for hours some times upto 12 hours ?
Can chikungunya made the symptoms worse
I have been diagnosed with FND and my life is hell I can only walk a few feet I’m dizzy most of the time I can’t use my left arm and I’m still waiting to see a specialist after nearly two years I’m at my wits end I really don’t know what to do
Don't give up Georgie Boy, this is a lonely diagnosis but there are plenty of people who have it and there are resources on the internet. While you are waiting to get into your appointment, journal your symptoms, find an online support group, fnd hope is a good one. Open up to someone you trust and try to accept that you're not alone. All the love I can give to you right now.
@@carlajeanhall thanks for your help Carla
I know someone with non-essential tremor. Does anyone here have this?
Again , comment on numbers is how many women get it one and three . With males , having a different upbringing to their counterpart, sister , the trigger for NFD , for males might be different . When it comes to health , can we please stop counting how many females get it , transfer it to how many humanoids get it .
But other than that , I have enjoyed your segment on NFD
That's shocking treatment regarding diagnosis no treatment process or support
I am 28 and had FND for 9+years now. Thank you so much for these videos 🥹🥺
This sounds more like MS. Tests don't always pick it up.
Lost my mum to severe ms last year ime diagnosed fybromyalgia CFS with elements of fnd all.mris are clear at present both of us have autism heds