FND IS NOT A MENTAL ILLNESS/ USING CBD/ UPDATE

[@ChrisCFNDjourney]

Mate.... I feel your pain. For years I've had double vision, hearing loss, numbness in my lower legs and recently migraine type headaches where I have stroke symptoms. Now, finally they have started to listen and I got diagnosed with FND after 4 MRIs revealing now thing. For the past 3 years it's all be put down to anxiety....... How can anxiety make my lose hearing? Make me have double vision? Numbness in my lower legs all the time?? As you say a lot in your video..... It's ignorance. Purely because they can't see it. It makes sense that something is happening with the signals and messages in the neurons in the body. Keep going fella, and we're all in it together and on the same journey.

[@John-y9b5b]

You are absolutely spot on the neurologist and doctors do not care about people with FND I am 59 and got told I had a unhappy childhood and it has affected me 59 years later trouble is I had a very good one then they said I must of been builled at school but again I didn’t he then said we are consultants we know I said absolute rubbish and walked out

[@dorafigueroa1026]

Hello Jack, I saw your last video and I wrote to you. I know exactly how frustrating it is to be living with FND and have doctors not believe your symptoms. I have FND, Fibromyalgia and Vulvodynia all of which are "invisible illnesses." Your symptoms are very real! These disorders are very real! It is extremely debilitating and painful! I also have IBS, GERD, spastic colitis, and gastritis. I started with what looked like strokes. Complete paralysis, went blind, loss of speech, my mind was disconnected from my body for hours. This happened twice. After this I've been dealing with memory loss, memory fog, slow processing, difficulty concentrating, difficulty breathing, extreme fatigue, brain feels swollen 24/7. Headaches or migraines, face and arm spasms, complete paralysis and dystonia. My body feels like it's on fire, I have joint pain, and irregular temperature. Reason I'm telling you this is because our problem is with our nervous system (nerve disorder). It's not sending the right signals to our brain. Right now my symptoms have lowered and I've had more good days than bad. I became my own advocate! I'm done immense amount of research. I have a degree in civil engineering and applied mechanics so I consider myself a pretty smart girl. I will like to share all that has helped me through this journey! There is hope and we can heal! Here are my suggestions: -Dr. Martin Rutherford Functional medicine practitioner & chiropractor (he surrendered from fibromyalgia himself) - Dr. John Sarno Therapy professor of rehabilitation medicine Books: The dividend Mind/ Healing back pain Mind body therapy Alan Cohen: book "A course in miracles" People with stage 4 cancer have healed after reading and applying what it's in this book. Dr. Josh Axe - how to heal leaky gut the root of many autoimmune diseases I know this is difficult but I promise you we can get through this. We must believe it! I hope that you consider taking a look at this information. - Dora ❤

[@joanne3692]

there is also a rehab place in london

[@lyonspainter]

Im a trained psychotherapist with 20yrs experience... i have a self diagnosis of fnd... its as if health care proffesionals are scared of what they dont know. Patronising avoidant incompetence. Cbd is working long term therapy to understand why we respond physicaly and emotionly the way we do.cbt is great as a support Thanx for your authentic vlog. Lyons🦁

[@joanne3692]

i have had fnd for 3 years there is an fnd clinic in bristol you can stay there for 3 weeks as an inpatient you have to get reffered from your neurologist although it is a 3 year wait. i had viral meningitis and then developed the condition called fnd. i can no longer walk as weak legs and feet, stiffness in my left arm and left side of my face speech not good. Still not 100%, i have the condition got no faith either really with doctors and neurologist.

[@janmariablackwell8138]

Jack, I suggest your doctor is having you on. There are many things that can cause a tremor. MS is one of them, too much caffeine, alcohol and drug withdrawal, an essential tremor, Huntington's and of course Parkinson's. So this person said that they know you definitely don't have Parkinson's. I'd be interested to know what tests you have had to rule this out. Only a DaTSCAN can show pointers towards Parkinson's, a normal MRI can't. Lumber punctures may be helpful but not always. Parkinson's is mainly diagnosed by symptoms over a period of years and not through blood tests and scans. Its highly unlikely it is Parkinson's and its probably something much more simple like an essential tremor. My brain scan showed up UBO's and a cluster of small swollen blood vessels. The report says "possible vasculitis". There are many, many forms of vasculitis and they are tested and looked for by a rheumatologist but my neurologist said, "Nah, I think its FND" and suggested I don't need to see a rheumatologist. I'm not saying FND doesn't exist but I understand that there are so many conditions (over 600) many of them rare, that these symptoms could be. Sometimes you could have something so rare that they may never find the cause but like I said before, until you have been tested negative for everything, which is just about impossible, you shouldn't allow them to label you with FND. It honestly breaks my heart when I see some of these youtube videos where people have gone blind, lost the ability to walk and even one person who was bed ridden and tube fed. These people need much more thorough investigations and not just told its a functional disorder.

[@John-y9b5b]

Well said absolutely spot on

[@janmariablackwell8138]

@@John-y9b5b I see it's five years since I wrote that post and a lot happened since then, including a diagnosis and an apology from the neurologist! Just short of five years ago I was diagnosed with a rare type of aggressive Non Hodgkin Lymphoma (blood cancer). Once I became real sick, I had a difficult time getting anyone to look beyond my apparent FND diagnosis and so I had to go privately (If I hadn't I'd be dead by now) Three years after considerable treatment, I went into and still am in remission. Interesting, when I first saw my haematologist, after looking back through my notes... to the point of seeing the neurologist, my platelet count was through the roof and my esonophils were raised. I was never told this by the neurologist, in fact he told me my bloodworms were all normal. I had an arranged meeting with this doctor and he tried to get away with it by suggesting I was just in the wrong department! I asked him if he'd even looked at my blood work because the warning signs were already there. In the end he ate humble pie, removed my FND diagnosis and even said he'd learnt something from this and was sorry he'd put me through that awful journey of abandonment.

[@beageraghty1704]

Just watched your previous video to discover that you already know about Prof Edward's FND Dept (Prof of Neurology at St George's University Hospital NHS Foundation Trust) Tooting

[@fndourvoices8416]

If that's the case with your neuro you shld ask to be referred to a neuro who specialise is fnd. You know it's not all in your head! We need more to learn what fnd really is. It says it in the title functional NEUROLOGICAL disorder. X

[@jackkilby6012]

Unfortunately in Bedford my options are so limited. There is only one neuro at my hospital

[@fndourvoices8416]

Ask on the group who people see in Bedford area. X