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Functional Neurological Disorder - FND Hope
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Fnd or just crazy

Hi ive been mucked about for the past 5 years with medical issues and now struggling to function half the time the doctors ive seen insist its in my head and ive told them to section me and they dont ive been in and out of hospital like a yoyo i suffer with sezures for the past 5 years with no tretment and over the past 7 months my legs have deteriorated and i have to drag my feet to walk. What use to take me 5 mins to walk can sometimes take upto an hour and its at the point where im falling and cant even carry a bottle of milk. All tests come back fine like im in good nick. Can anyone shed some light on this please

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Hi I'm so sorry your going throw this fnd is life changing .most doctor don't believe in fnd unfortunately have you see a neurologist .they will be able to help long waiting list .they can we request you to a physio .your not crazy

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I think I may have figured out why people don't take people with functional neurological disorder seriously. Hear me out. I have fnd. People told me it used to be Hysteria in the 1800s and 1900s (people think it's a hoax diagnosis or fake diagnosis for this reason) and then it was conversion disorder. But from what I know about history of mental illness, the symptoms associated with hysteria in the 1800's do not match the symptoms of fnd at all. So why do people say that fnd was at one point labeled Hysteria. I think that's something that needs to change, if we keep telling people that's what it used to be called no one is going to take anybody seriously, I believe it's something doctors made up to make people with fnd feel crazy because science isnt able to catch up with what the disease is yet. Did you know science found a new organ in the body recently it's called interstitium, if scientists found a new organ recently, scientists definitely have not found all diseases. People with fnd do not have Hysteria, hysteria is a fake diagnosis because people were ignorant and uneducated about the woman's reproductive organs and behaviors in the 1800's. They cured female hysteria with orgasms and vibrators.. they really weren't too bright. When I look up fnd on Google one of the first things I see is Wikipedia stating that functional neurological disorder used to be called hysteria. I honestly think this is false information and it makes people with the diagnosis feel invalid when the diagnosis is very real. If you go into the doctor with a migraine, they don't always test you they typically believe you and give you migraine medication. When you go into the doctor for cold they don't say "ah! I don't believe you" (typically) they normally will give you some cold medication without any test. Functional neurological disorder has a bad rap, the only reason is because it's so serious and doctors get frustrated because they can't help yet so people is make up rumors. We need to fight for not just a cure but respect. We are truly ill, we have real seizures real stroke-like symptoms, some of us even go blind and paralyzed, EVEN KIDS. This is a serious matter. Nobody is hysteric. The symptoms from the 1800s of Hysteria where "symptoms, including faintness, nervousness, sexual desire, insomnia, fluid retention, heaviness in the abdomen, shortness of breath, irritability, loss of appetite for food or sex, and a "tendency to cause trouble"."so I would just like to know when in history when did neurologic symptoms get labeled as Hysteria? It seems like a blanket term for what people didn't understand honestly, people thought epilepsy was demons in the 1800s. Your not crazy. Crazy people don't know/can't comprehend "crazy"

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I had the leg thing. Mine came on suddenly after a viral infection in Aug 2010. It stayed pretty consistently for about 7 years. I was diagnosed first with ME (as everything totally exhausted me), then FND (as not being able to walk was not typical ME). I was referred to the National Hospital for Neurology and Neurosurgery in London in 2013 for intensive neurophysio. I could walk 19 steps a minute when I went in, and 26 a minute when I came out. But as was normal, after that week of exertion I relapsed badly and was again virtually housebound for many months.

The suggestions and explanations they gave there were key to my later slow remission. First was that these symptoms were caused by some kind of brain misfiring - only in this sense is this condition 'all in your head' - or because of suffering an attack (in my case a severe hemiplegic migraine, possibly triggered by the viral infection). That misfiring had reset some key neural pathways. In my case that was the pathway that regulated the semi-automatic function of walking. Brain messages about how to walk were now plodding along at the same speed I was: lift leg, balance torso, bring leg forward, balance torso, place leg on floor, bring torso forward and turn slightly, rebalance, lift other leg....etc. etc.

Physically this meant I walked like a robot who had wet herself. It was placing extreme muscular strain on all my limbs as muscles were over-contracting as they acted hence the continual pain and fatigue. (Walking is in fact a learned practice of interrupted falling - just watch a toddler and you will see it). In terms of brain drain when your brain remakes complicated pathways for something it once did really simply, it is phenomenal, using up a lot of the brain function you really need for other cognitive functions...like remembering you left the gas on in the kitchen...

It is therefore (especially if you are a naturally driven (aka stubborn), independent (aka obstinate) and busy person) a self-perpetuating cycle. The harder you try to increase your output the less you find you can do.

I had a long period of enforced rest (following brain surgery for another unconnected condition). I learned to live by one piece of advice - don't walk if you can't walk automatically becuase you are reinforcing the new complex pathways. This was much easier to do when my (unfortunately inoperable) brain aneurysm brought me to the realisation that a slower life was better than no life at all. Over time my slowing down enabled me to speed up.

This last year and a half have seen a gradual improvement in my leg function. I still get the odd blip and issues can reappear again for days or weeks, but generally I am better, can walk unaided and so my cognitive function has returned too.

Typical ME 'crash' advice helps. The MEAssociation website is a great resource. Whenever I start to go, I retrench entirely. The mobility scooter comes out, I cancel any appointments and social activities. And wait.

It has been a very slow return to some kind of normal - you do not expect to have to convalesce for 18 months to get over something. I know that I am not fully recovered and may never be - like my husband who has a tendency towards pneumonia (because of acquired lung weakness) if he gets a cold, I have a tendency to a neurological malfunction (because of an acquired brain weakness) if my body systems are put under unacceptable loads of physical, mental or emotional stress or any combination of the 3. But things have improved dramatically.

So there is hope. It can get better. And yes - it is in your head - because that is where your brain is. It does have a psychological component - because emotions and anxiety take a lot of brain power and there isn't enough to go round in a brain that is trying to cope with major diversions round a problem area. And rest, relaxation and retrenchment will help. It is the art of convalesence, which we lost as a society somewhere in the 30s or 40s. Reclaim it, give your poor brain time, space and the resources to re-establish and resurface its own major routes and you may see improvements.

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These are such great replies... it helps with so much in life to have people tell their story and show how things can be better than they seem when everything feels stuck.

And I really can't add anything more that what's already been said Jayfranks2018 but sending you hope and best of wishes in what sounds like a hugely frustrating time.

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Thank you for writing this. They thought I had had a stroke when this happened to me almost 3 years ago. However, most strokes only happen to one side and it happened to both of my legs. Mid back down was paralyzed for a few days. I have gotten some movement back since but am still in a wheelchair and not much hope left to regain mobilityin my left calf, ankle and foot. The way you wrote this made me feel like I am not "crazy".

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Hi Jay. To understand FND better, I purchased the Kindle version of "Functional Neurologic Disorders" (volume 139 of Handbook of Clinical Neurology) from Amazon.com. My Amazon Echo Dot reads the book for me (I can use the Kindle app to change chapters, and then I "sync" and close the book in the Kindle app to get my Echo Dot to change locations in the book. I highly recommend reading or listening to the book. It was worth the $220 (compared to what I have paid in medical co-pays).

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I can tell you what I did. Just recently. I stopped. I moved back to my hometown and am living with a friend who is struggling financially and with some situational depression. I sit on her porch now and say hello to passers by. I clean her house and we talk and watch television. I won’t fight with the doctors anymore. Or myself. I let go. I live in poverty now but everyone around me knows suffering and helps me out. I share what I can which is kindness and gratitude. I’m going to see a pain specialist here. I’m not going to fight drugs any more. I can’t think anyway, and would rather be able to be comfortable instead of productive. I am however as useful as I can be without overdoing it.

I guess I’m saying that the only person who will judge you for radically simplifying your life is the part of you that wants your old life back. Put your old life on the shelf. Honor who you were. Let yourself become.

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Ketamine therapy. Please research it. For many of us the best available treatment is TMS - Transcranial Magnetic Stimulation. It restores healthy neural function, a brain problem common to many with FND's. However, TMS is expensive and difficult for low income patients to access. Ketamine therapy works on the brain in a way that is similar to TMS. But it's much less expensive. And if a patient can't afford Ketamine infusion therapy they can learn online how to self administer ketamine if they can access some on the black market. Done properly it's a safe therapy utilizing very low dosing with little or no side effects. Like TMS , ketamine therapy is prescribed for drug resistant depression. But patients with FND's share a similar problem with neural function as those with refractory depression. Hence TMS (and therefore ketamine ) can benefit those suffering with FND's. And finally where FNDs are concerned doctors are good for one thing only -- helping you access treatments or therapies you want to try. In that regard many of us have to treat ourselves by researching and identifying treatments that might help then agitating docs to help us access those treatments.

My 💝 goes out to you and I wish youa lucky turn in your condition. I hear you, share it with you and have for seven years. I am 64 this month.But I will not go out this way.........heartless doctors be damned. I am fighting my way back and will not take "no" for an answer.

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I’ve used psilocybin with great results, but supply has been difficult. I’ve signed up for ketamine and MDMA studies but haven’t heard back. I’m making my way. I recently (last week, in a fugue) left the big city and returned home. I now live in poverty as I was born, but the people that live around me truly care about and for me, and I’m able to return a little, and it’s appreciated for sure. There’s always a way.

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I'm so glad to hear you're actively pursuing solutions. MDMA can be wonderful for therapeutic sessions. But Ketamine has a positive longer term physiological effect resulting in the production of new brain cells and improved neural connectivity. Keep hunting for studies.

Being surrounded by people who care for and take you seriously is so important. That support produces a positive neurological response and is just plain old good for the soul.

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Dear,

I'm a UK doctor researching new therapeutic options for FND and CFS, and I would like to find out more about FND or CFS patient's experiences with Ketamine/Psilocybin/MDMA as a first step in potentially developing these further.

I would be grateful if you(or other people reading this) would want to get in touch: mathieu.seynaeve@kcl.ac.uk

Bw, Matt

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I'll send you an e-mail within the next few days.

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Try to locate and access a Neuro-Psychiatrist. They are rare because they'd double degree'd - both an MD Neurologist and PHD psych. They specialize in outlier neuro disorders including FND's.

Meanwhile ask your neurologist to order an fMRI study. Many patients with FNDs have disrupted neural function that is revealed only by fMRI. ( You can read about the clinical study that lead to this type of testing in the July 2016 issue of Neurology Today. ) For many patients with FNDs the most effective available therapy is TMS - Transcranial Magnetic Stimulation which is designed specifically to correct neural dysfunction.

Now it appears ketamine therapy works on the brain in a similar way. It's also cheaper and quicker than TMS.

Also - for many patients who struggle with limb weakness Cognitive Behavorial Therapy has proven helpful.

This can be a long battle. But we only get one go round in life so surrender is not an option. Fight. And don't take "no" for an answer. We all have to advocate assertively for ourselves. And if that means getting in your docs face and demanding help......do it. This is no time to concern yourself with politeness.

God bless, good luck.......hang tough.

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