Functional Neurological Disorder - FND Hope
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Was misdiagnosed with FND. And feeling very angry!

Around 5 years ago I had a sudden onset of seizures, movement disorder, gait and balance issues etc. I went to A&E twice, both times I was told it was 'conversion disorder' and was sent home with a link to the NeuroSymptoms website. I was having trouble speaking and emotional liability. Neurologists just immediately saw my history of mental health issues and made assumptions.

I deteriorated for years, including my mental health and cognitive function. No GP took me seriously as I had this diagnosis.

I am now under a new neurologist, and I have the real diagnosis of been suffering with adult onset rheumatic fever, which caused Sydenham's Chorea- i.e the symptoms the 'conversion disorder'.

I had been to my GP complain of joint inflammation and chest pain, about a month before the sudden onset of symptoms. But I was told it was 'fibromyalgia'!

I am so angry that I was immediately diagnosed with this condition, without exploring further causes. FND should be a diagnosis of exclusion, and can also be co-morbid with an underlying neurological condition.

I'm not saying that FND doesn't exist, but I'd urge anyone with this diagnosis to think about any instances of inflammation or illness. And please get a second opinion if you feel you need to.

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I can relate to your anger.

In February, 2017, one night I had a sudden onset of neurological symptoms: stutter, slurring of speech, tremor, convulsions, seizures, loss of vision and consciousness, hallucinations. During two visits to the emergency room, they did some scans, gave me a benzodiazapine and sent me home with a diagnosis of conversion disorder and muscle spasms. But within hours of returning home, the symptoms returned. Another ER visit and I got a tentative diagnosis of cervical dystonia. Three neurologists diagnosed me with FND. They did no blood tests. They did no nerve conduction studies, EEG’s or anything. They looked at MRI’s and CAT’s and CT’s and said there was nothing wrong. The only test they did was for Hoover sign.

And so for a year, I struggled with seizures all day long and horrible dissociative experiences. I have DID, and the experience ripped my mind apart. I now have 33 personalities where I once I one primary and a few that came out in certain specific circumstances. I went to a psychiatric hospital twice last year. In both cases, they told me they were more worried about my physical health than my mental health and send me on my way after a week.

Keep in mind that no one ever did tests besides Hoover’s sign and some basic blood work (CBC and basic metabolic panel tests). There were some levels that were slightly out of range, but coupled with no apparently lesions, aside from rapidly progressing osteoarthritis, they simply reconfirmed that I had FND.

After 18 months, I gave up. I couldn’t work (and still can’t). I was down to just enough money in my bank account to survive for a few months. My ex refused to lower child support payments from $2000 a month, even though I couldn’t work and my kids stopped seeing me because the illness was too much for them.

I cashed out my 401(k) and moved into the ghetto where I was born. I came home to die. I had no support in the city where I was living (Denver). What acquaintences I had evaporated when I got sick. I had no one to cook for me or help me in any way. I was driving with seizures because I couldn’t afford cab or Uber fares. So I left. I moved in with a girl I used to play with as a child. She thought I should at least see a doctor here, and so I did.

They were dumbstruck that no blood tests were run. That no ultrasounds were done. That not even an EEG was done. So they started doing them. I’m still in the middle of it right now. I’ve had some blood work done. I have some important levels that are off. Like Vitamin D3. I’m insufficient, and they said that it could be the cause of a lot of my pain. My liver function tests are off and I have pain under my rib, so they’re looking into that. I’m seeing a pain specialist who is looking into ablation. The neurologist I’m now seeing is testing me for Wilson’s and Huntington’s and other genetic problems.

I’m sad and angry that it took over a year before any doctor did more than stick his hands under my legs and make me do some weird maneuvers to come up with a diagnosis of an untreatable and un-understood neurological disorder (FND). I’m pissed off that I had to move from a city of 3+ million to one of 30,000 in order to get adequate medical care.

I still don’t know what’s wrong with me, but at least doctors are trying to help me now.

To tell you the truth, I sometimes feel like FND is starting to be overdiagnosed in order to get funding. It’s one of the most underfunded research areas in medicine. Or doctors are lazy. Or just stupid. Or cruel. I don’t know. There’s a real problem with FND and the diagnosis thereof, especially for people like me and it sound like you who get this diagnosis based on flimsy evidence and no followup. Worse, I was told by all three neurologists that I didn’t need to pursue any other tests.

Let me repeat that: I was told by all three neurologists that I didn’t need to pursue any other tests.

That sounds like the opposite of “care.” Why would you diagnose someone with untreatable neurological problems and tell them, basically, to stop going to doctors? Admittedly, they might not have explained it well, but that’s just the point! I have cognitive problems from whatever disorder I *actually* have. I don’t understand well. I get frustrated and angry. Those are signs of real problems, especially when I try to explain that I didn’t get frustrated or angry or have comprehension problems before the onset of the symptoms. My goodness, I was the valedictorian of my high school and a professor. Now, I cannot read the directions on a Hot Pocket box to fix myself a meal! But the doctors in Denver didn’t seem to care. Hoover’s sign. FND. Go home and die.

FND is a problem. The diagnosis of FND is even more of a problem.

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Agreed. And I'm so sorry you went through that.

I also do have legit mental health issues including dissociation/ PTSD. But that does NOT mean that I, or you, or any other MH patient don't have proper neurological conditions too.

It's all too easy to misdiagnose people with MH issues.

I was told that the pain I had was 'fibromyalgia' from depression and childhood trauma. When actually it was nerve damage from Rheumatic Fever.

And people can have an underlying neurological issue and FND symptoms.

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I was looking up rheumatic fever. I should really get some of this checked out.

Because of my child abuse, I never went to the doctor when I was sick until a few years ago because of hip pain. I used to just muscle through everything.

I’ve had strep many time and never had it treated. I had mono or some other adnovirius in my early 30’s. My doctor didn’t diagnose me: my child’s pediatrician did, because she was having the same symptoms. I would go between a fever of 103 for an hour, and then it would drop to 94 degrees for and hour, with an intense sore throat, chills and fatigue. I went to work like that for over a month before my boss finally told me to go home and rest. Then again, I didn’t get chicken pox until I was 20, and had very similar symptoms (the crazy body temperature changes). I know I tried explaining this to a doctor once, but he just smirked and said that it wouldn’t be related.

I just need someone to sit down and listen. Doctors go so fast at these appointments. Even in the psychiatric hospitals, you only get like 5 minutes with a psychiatrist a day. How are they supposed to diagnose anything when they don’t talk to you?

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Yes! I too didn't go to doctors either. Child abuse left me with high pain tolerance and also made me neglect myself (self-harm too).

Go get an ASOT test if you can, privately. That will see if you've had strep in your system.

As soon as I told my neurologist that I'd had numerous strep infections she took it seriously. You can get rheumatic fever as a result of untreated strep, and not know it.

The crazy body temperate issue is relevant, and can be a sign of brain damage as the hypothalamus regulates temperature and it can get damaged.

Look up PANDAS and Sydenham's Chorea- they are both effects of chronic strep.

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Thanks!!!

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Oh I also had the neurological issues you describe- the cognitive decline.

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It started slowly but is getting worse.

I have a hard time reading now. When can *see* but I misinterpret it, especially when there are multiple lines of text, the words from one line get mixed with the words of the other line. But I hallucinate and have focus problems, so even just seeing well is a problem some days. And theres this weird effect where without my glasses, flat surfaces in front of me have a hyperbolic bowing away from me the further out from the center point. I used to have 20/20 vision until these symptoms started and suddenly needed +2.5’s even to see the food in front of me much less try to read.

I can type okay, but I never reread it. But even that said, I’m starting to misspell a lot. Sometimes when I hear people speak, the phonemes are reversed, and that’s starting to affect my typing. Like instead of “let’s eat” I might type something like “leets ale” or something along those lines. The more stress, the more errors.

The brain fog sucks the worst. I had some luck with NAC but it’s not doing the trick any more or I need to up the dose.

Ah, well... I had a good life until recently.

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That's exactly what I have!

It's from being light sensitive- glare on the paper makes the word swirl around and it's hard to follow. Try overlays, like for dyslexia.

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I’m trying to get someone to evaluate me for Irlen syndrome... one I have the cheddar for it.

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You could just buy some overlays and see what works. The blue overlays worked best for me.

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I’ll try that. Funny: I wear blue sunglasses most of the time. It seems to be the right color to prevent seizures when I’m outside or in a building. It might help with reading. Thanks!

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Get your bloods sent to igenex.com/ to eliminate the possibility of Lyme and co-infections.

I’m too ill today to type further. Read my profile bio.

Xx

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I just read your bio. Your story sounds so similar to mine.

Wow, well done on finally finding out the cause.

There needs to be a law that CD/ FND should be a last resort diagnosis, and it should be a working diagnosis that needs to be reviewed.

I'm so sorry you went through that- it's soul destroying.

I also had a neuropsychologist said I had 'somatic symptoms' without even going into my medical history. It's dangerous!!

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100% I agree with you FND should o my be given after a thorough tests have been done I to after many many years of being untreated and made to feel like my health didn’t matter , only to find out last week after seeing my rheumatologist as I to had high RHumatic factor and high influmation markers that he listened to all my symptoms and did nearly every test possible to find out what was wrong, and very similar symptoms to you to find out I have chronic EVB Whitch has brought on an autoamune Dissorder . Only for my own reaserch and asking for my RF and influmation markers to be done I was referred to my rhumotilogist . All doctors to should have a proto call to test for all things including , bacterial infections, vitamins and minerals , RF . Everything needs to be ruled out before FND is given as a diagnosis many people who need proper treatment are going without because doctors arnt doing their jobs properly. I also don’t believe FND should even be give at all what the hell people converting emotions into symptoms BS if doctors look further into things they will find an actual cause for our illness .

I hope that others will read our story’s and maybe be able to ask for proper testing to rule out any real issues going on in thier bodies.

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Omg!! I'm so glad you found out what was wrong. Thanks for sharing your story.

It's so tragic to read the stories of people who were diagnosed with 'conversion disorder' or FND, and to find out that the label prevented them getting a proper diagnosis.

I've not got permanent heart and brain damage because of this stupid label.

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Delighted you finally got proper testing done and a diagnosis that can ACTUALLY be treated! Xx

I too wish people would listen to us more instead of just accepting FND as I find it’s just a cop-out because they have no idea what’s wrong with us. We have to take our health into our own hands and stop relying on these quacks! Xx

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Hi guys i was diagnosed last year.Even tho i accepted the diagnoses at the time part of me could not accept that that was it.Tests they do dont go deep enough so i started to research.As i believe toxic life style diet etc creates health problems i decided to change all this.So as of the 1st of Jan i started eating uncooked food only and taking herbal formulas.I had been on 5 meds and stopped all those.I stopped dying my hair got rid of all household chemicals reduced EMF exposure got rid of my makeup and perfumes.So as of today i do not shake rattle and roll or have seizures.The only time i have symptoms is when i stand up and close my eyes which in my research i found this is a symptom of nerve damage or Neuropathy.I have no blood sugar problems since changing my diet so my Neuropathy symptoms are not caused by diabetes.I have struggled with a life time addiction to cigarettes which is also on the list of Neuropathy causes.So after 50 years of smoking i have to quit this is the big one for me but i have a plan and support.It is my conclusion that it is damage to the nerves that had given me F.N.D symptoms.I know not every one is a smoker but do believe nerve damage to be the cause this is something that will not show up with brain scans.I shall continue exploring this and healing also encourage you all to look deeply in to your life style and toxic overload.Much love to you all on your journeys, Nicola.

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