Q&A with Professor Mark Edwards

Professor Mark Edwards discusses care pathways and answers questions like is FND psychological.

[@-nanabanana]

I can't thank you enough Professor Edwards for doing this Interview 🤗 I have Fam ET but started to have most of Parkinson's symptoms. After being told I did have Parkinsonism for 4 months during which time I researched, subbed to Support Groups & told my Family. Now I have to adjust to a different diag for which my Drs think of as malingering and I don't want to tell my Family, but they will be glad to hear for my sake and theirs that so far it's not. If it wasn't for Videos like this I don't know how I'd cope😢 BUT as I've come to understand it I've noticed I'm walking better & my Tremors have less decreased!! Thank you so so much for hosting this FND hope, I'll be Following for more❤

[@te-arnchalmers8796]

After a car accident where I fell asleep at the wheel due to burn out (pushing myself to the limit everyday for 10+ years), I was diagnosed with post concussion syndrome, then PTSD and finally FND. My symptoms are mostly speech, fatigue, cognitive and memory processing which I self managed for 3 years. Recently, after a very stressful workplace incident, I have had a complete relapse and now I can't work, at least for now until my symptoms resolve. I already was seeing a neurologist for chronic migraine prior to the accident and as they are unable to treat me for FND, have directed me to FND websites. Eventually, I have found this video and it has answered so many questions my neurologist did not have time to answer (not their fault, just how the system works). I have received very mixed signals around exercising with fatigue and put on a bit of weight not knowing if I should be pushing myself to exercise or not. As a solo parent and a PhD candidate, a big thing for me is to stop doing everything and feeling guilty when my body is telling me to slow down. This Q and A is very helpful. Thank you!

[@martinbfnd]

professor mark edwards is amazing and helped me loads when i meet him. a great Q & A . thank you FND Hope

[@charleshunter429]

I suffer with Complex FND And Complex PTSD and Fibromyalgia and the PTSD seems too drive the FND making my symptoms worse tremors, spasms pain and tiredness with balance problems and double incontinence at times it’s hell . Thank you so much for this video. And may I add my Neurologist is great taking the time to explain it too my wife.

[@jadebass-qc6of]

I’ve never known anyone explain how I feel so accurately

[@mickeyj9771]

Thankyou doc listening to you has given me hope . Regards Michael from Australia

[@ivorybow]

I was diagnosed a year ago and I am very atypical. I am 74 and just can't fight anymore. I'm getting close to needing a wheelchair from pain and growing weakness, and I am too exhausted to manage any kind of "treatment" proposed by doctors who don't believe in FND, or my illness. I've been told repeatedly I'm just depressed. Well, they would be depressed too of they lived with what I do

[@Huldameable]

I'm sorry for your suffering.

[@ivorybow]

@@Huldameable thank you for your kind words. I recently got some support of a regular house cleaner provided by my insurance, and this has really lifted my spirits because now I don't have to struggle with that. And I have a physician now who takes me seriously, so he is helping me find ways to work around my limitations. My advice to FND patients...just keep believing in yourself and going for what you need, to have the best life you can.

[@Huldameable]

@@ivorybow I'm sure assistance with housework has been a huge relief. And having a medical professional acknowledge and affirm you must make all the difference.

[@heathersoper6923]

I need to see Professor Edwards privately, I have psychogenic tremor, have had it since June 2018. I’ve had no help from GP’s. I was recommended to him by Charing Cross hospital, how do I contact him? My tremor was brought on by my emotions, I had brain scans and nothing is wrong. I was badly conned and now need an operation, I have put 2 men in court.

[@jadebass-qc6of]

The problem I’ve had in terms of being understood Amd believed by doctors is that I’m not jerking dizzy confused unable to walk etc plus more all at the same time At mins, 22 he explained that the more activity u do the worse u feel (think he said any minimum activity which is true for me) If I had all my symptoms all that the same time at the time I had my appointments then I may have been taken more seriously However I had one neurologist who actually listened I was mid sleep seizure at the time He really heard me U can tell the ones who care about their job and the ones who just go by a book and think they know due to a heavy workload I wish I could afford private care As I’m a burden on my dad and boyfriend they do everything for me and I hate it

[@wandalynnellis7814]

I've been dealing with FND since childhood. Was only diagnosed in my 30s. I was also diagnosed ADHD and I scored extremely high on the Autism spectrum pre screen. Symptoms are always there except the movements come under extreme stress.

[@jimmill3384]

So it took me like 6 years to finally get a diagnosis and still have not had a good treatment for other than they're treating me for my bipolar ECT Believe or not that has helped but I was diagnosed with conversion disorder which I know it's the same thing. But it is frustrating that neurologists are almost scared to diagnose it and and then even if they do, they really don't have good treatments for it. So I'm glad you're addressing this

[@jadebass-qc6of]

Thank god for him At least the truth is coming from someone who knows the facts So much respect 🫡 Thank you for posting this I have FND. X

[@NaomiKFCHutchin]

These videos are very helpful, I'm currently waiting to see Professor Edwards myself, I haven't been diagnosed yet. It would just be nice to be able to name what is wrong with me.

[@ravellabrincat2125]

I was told this week that I have it , I have been in pain for 6 years plus . Every time I want to doctors ,I get told you have nothing..for the last 6 years my lift side has all gone wrong my foot knee hip lower back. Its been a nightmare and still I dont know what is going to happen I feel a bit lost really .I will see the physiotherapist next week .

[@francoisrobillard3164]

Ravella Brincat you re not alone in this. Search for a fnd support group on fb .there is no medical solution there but at least you could vent frustration and feel isolated in this.

[@heathersoper6923]

I was referred recently by Dr Molloy of Charing Cross to Professor Edwards at Saint George Hospital, but I have been told just today that Dr Edwards isn't there anymore. I have Psychogenic tremor to every bit of my body, is this FND? I have chronic anxiety and stress, what brought on the tremor was that every organisation failed me, I was badly conned, the men are in court and I will need an operation. I would therefore want to see Dr Edwards privately but don't know how to contact him.

[@dermlover1]

Do any of you have just sensory symptoms? Numbness, tingling, burning, cold water sensations etc. WITHOUT weakness, seizures etc?

[@jadebass-qc6of]

I have u what u have plus what I said I don’t have It’s hard Hope you’re ok x

[@toiletresin]

Check out spinal cord compression syndromes if you don't know the cause; I think Anterior Cord Syndrome, if I recall correctly, involves sensory without motor disturbances. (It can be caused by herniated discs, spinal tumors, and other spinal masses, so I'd recommend spine as well as brain MRIs if you haven't gotten them already.)

[@MartinNeep]

I don’t have a diagnosis but suspect FND, all of my symptoms are sensory. I have a constant restrictive/squeezing sensation around my torso. I also feel like I have a huge bulldog clip permanently attached to the skin on my lower back. Both legs and feet feel sunburned and I get electric shocks that shoot down my right arm. My sleep is awful and I’m very sensitive to heat. MRI was negative for demyelination, but did show some mild anterior cord deformation from an osteophyte at C5. Neurosurgery dept. did not consider it significant enough to explain symptoms so I’ve been left with no help.

[@koober1]

I have a lot of sensory issues. I get numbness/fullness in my head and throat and muscle twitching in my face. Driving is hard cause my eyes have a hard time taking in all the information quickly. It can trigger anxiety and panic attacks now. Which never happened to me before. My neurologist recommended trying neurofeedback. So I'm trying that. Any other treatments that would help this type of FND?

[@LynnVS1958]

So if this a malfunction of the brain, what is it caused by. Could it be a constant pressure from cortisol being released causing a corrosion of the brain.

[@bettykellogg5152]

This is the first time I've listened and would like to learn more as we've never heard of FND .... is there any cure ...

[@francoisrobillard3164]

Elmer Kellogg there is no cure! They dont know what it is so they wont spend money on this cause there isnt enough people to make money from.

[@stillwaterband]

cbd oil healped me aott!!!

[@girlgamer4819]

Is dissociative seizures fnd?

[@bettykellogg5152]

Our granddaugter has been told she has FND. She is a RN herself and now unable to work, due to this FND and what does her future look like, what can she do to try to get back to normal..... ??? She's had lots of tests and Drs app't and now seeing another specialist in May in Chicago, Illinois. Sure would like to hear from you ......

[@FNDHope]

If she is seeing Dr LaFaver in Chicago she is in good hands.

[@bettykellogg5152]

@@FNDHope Thank you so much for this information. We all appreciate this.