Functional Neurological Disorder/Conversion Disorder

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Metabolic panel results

#ChronicIllness #Autism #Doctors So. . .here we go again. Results are abnormal for metabolism. We have done inborn error of metabolism to normal results. What. On. Gods. Green. Earth??? Low carbon dioxide(again lower than result done a year ago), high creatinine serum, slighty high A/G ratio (again), potassium (new, slightly low.) I don't know all it tells for A/G ratio is some kind of kidney, liver, intestinal disease. I'm seeing a G.I. Crossing my fingers that's she's nice. Neurologist is officially stumped as to what to do & I'm getting pretty pissed off. Since I don't technically have a gp (a care coordinator has been assigned to my case) I'm going to put serious pressure on the G.I to hopefully come up with something that makes sense because I'm to get autoimmune, endocrine, & infectious disease doctors...This is a medical nightmare. Forget crap like FND this, this is our monster! (squeals* I'm scared-) Let's see the face of this primary who told me my problem is transient!

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Out of options & no support from family members

#ChronicIllness #AutismSpectrumDisorder #Stroke #Disorder #SpinalCordInjury #Undiagnosed #CognitiveDisorders Where to begin. I honestly feel like one of those people kicking a can down a lonely street. I saw the new primary & wouldn't you believe it he was "get him in get him out" mentality. He was pretty rude, didn't know what he was looking at,& told me it's transient. (yeah having steatorrhea with undue fatigue & urinary issues that lasted 18 months is a short term issue, you know what, there right I should just sit here & do nothing.) I've noticed a pattern male doctors have this pride of there's nothing wrong with you just sit there & though it out. Honestly that's what I want to do because no one else cares... Where as the females actually have a tendency to care. I don't know what it is I really don't. But with that aside, I'm done with doctors. There you happy now? I have a physical therapist who has here own attitude problem & is determined to not only get nosey with my doctors but diagnose an fnd issue. Well I have no choice but to agree with her. But, 18 months has done nothing to help the posture so there's that. Now, I'm doing a full vitamin panel against this doctors will (I'm just a burden.) I told him insurance would cover this test completely & that I had a chat with insurance & they said it's covered. Oh, I did complain about my problems porencephaly, laryngocele, spinal cervical degradation, mildly low Igm etc. She recommended a disability coordinator for this mess but now that I don't have a doctor anymore what can we do?

You know as a kid I always wanted to have friends so that I could learn to be normal...well I never got that opportunity, sad, but what can you do? I used to be envious of not getting a diagnosis so as to find my village. That has changed ever since the porencephaly diagnosis in December of last year. Now I don't care so much anymore. I'm uncertain if we will find an issue with my vitamins. I can't wait to come into physical therapy tomorrow & be told your doing this on purpose, knock it off! What a world we live in oh well. My life has gone up in flames because not only do I have to work on my own issues but I have to work on other peoples attitudes.

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Hello I'm new

Hello I'm new. I'm also new to Socialising in general so I'm really anxious. I have a very secluded life and I am lonely. I look falword to makeing a fool of myself as I get used to the world of Socialising 🤣. I may get a fue things wrong and please let me know as I do so. My problems include the following #Depression #Autism #FunctionalNeurologicalDisorder #GoldenharSyndrome #ADHD #PTSD #Anxiety #Dissociation #BasilarInvagination (Basilar Invagination problem with spine and neck)

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I'm new here!

Hi, my name is Athena_Gray. I'm here because the blurtitout.org site is no longer running, and this looks like the next best thing.

#MightyTogether #PTSD #AutismSpectrumDisorder #FunctionalNeurologicalDisorder #Depression

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Psychology – Seven Years of No.

I have resisted talking to any mental health professional (for myself) for over seven years. Although it has always been clear that my chronic pain developed after a workplace injury in the early 2000s and still is the pain trigger for my Functional Neurological Disorder (FND). I have always had family, friends, work colleagues, allied health teams, and well-intended keyboard warriors question my mental health and FND symptoms.Therefore I have been dismissive and extremely assertive in saying NO to any mental health review/s or treatment/s. So if planning was needed from a social worker for a hospital discharge, I’d say no; if Chaplain services were offered, I said no. I was closed.   Mental health was a dirty word growing up, and the negative stigma placed on these illnesses grew an unhealthy and unbalanced approach to supporting me.I was the first to offer and set up support for my family; however, if it was about me, a hard no.I had a standard approach; I was always ‘okay’ and confirmed to anyone asking that I could and would sustain anything, no matter what pressure or how full my cup was. I thrive in stressful environments and have a high-stress threshold, which has made me successful in my professional and academic endeavours.I visited my GP about six weeks ago, and he asked if I was talking to anyone about my disability. I quickly responded, no! He was gentle with his second approach and asked me differently. He said, ‘Jeramy do you think you need to talk to a psychologist, someone to talk to about coming to terms with having a permanent lifelong disability?’ This time my response was different. I paused for a bit, I got up the courage and said yes.Another appointment was booked for a mental health plan, and a referral was given to a specialist pain psychologist close to home.I was still second-guessing the appointment booked and nearly cancelled a few times, not wanting to ‘fail’ or be seen as someone not coping. This engrained inner voice steered me away from something that could potentially provide the start of a new headspace and clarity.The first session was challenging; it takes time to connect and trust, and there were elements of their plan that I had already done considerable research and work on personally. We both needed to adjust for session two. By the second session, both parties better understood, and we could dig deeper.It will take time to accept that FND and chronic pain are permanent lifelong disability. However, my disability is part of me but it does not define me. I can still have outrageous career goals; we can build our family’s dream home, and I can still provide (continue to work) for my family. I need support in some areas of my life to do this; however, it’s more than possible.So back where we started, I saw a psychologist and began a relationship with a specialist that needs me to be introspective. It’s been a rough, raw month. Childhood memories, trauma events, mistakes, reflections, and many conversations with my wife and younger brother about the ‘meaning of life.’ We have concluded that life is messy and at times, unfair. Trauma is real, it impacts people differently, and is no less impactful or real to others. Trust me it’s a lousy exercise to measure who the most fucked up one is.I hate when people ask me why I have a neurological/brain disorder or why my legs wobble. I’m not too fond of it when people make assumptions or decide on my behalf what’s going on for me. I have to accept many unknowns, and that’s ok. While I do that, hopefully, I will get the opportunity to learn to move forward and enjoy things I have traditionally closed off; as an example, enjoy Christmas again. Whatever acceptance means to me about my disability, I know to embrace this.I am in hospital again:

Is this because I am in pain? Yes.
Is this because I can’t walk? Yes.
Is this because I am unsafe at home? Yes.
Does having a head full of family stressors contribute? Yes.

However, this is who I am for now. In the coming months, I am hoping for balance. Support at home from the NDIS would have kicked in, and equipment prescriptions underway will hopefully reduce the frequency of Hospital visits and maintain some level of independence.

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Fed up and lonely

#ChronicIllnessEDS #SpinaBifidaAwarenessMonth #ChronicFatigueSyndromeampME #FunctionalNeurologicalDisorder #Endometriosis #SleepApnea
My husband is frustrated, annoyed and always mad at me at the moment. I have the above conditions and juggle 3 businesses. I’ve been through a high pain flare recently so yes I’m on the sofa watching TV to recover. My husband does work long hours, he’s also self employed, drives many hours and is having a rough time at work.
I feel like because he’s having a rough time he’s turned into a bully at home, I try to stand up for myself but it’s really tough on me emotionally. My mum and dad are both narcissistic I feel that I have no one to turn to. There’s only clients in my life, no true friends to turn to. That’s because when I’m not working I’m recovering, friends aren’t interested.
All I want to do is run away and hide to get some peace. I’d stay in my Horsebox but I need electricity for my Cpap machine & fan that I have to sleep with. I’ve no spare cash for a hotel, I just don’t know what to do.
I thought maybe posting on here might help

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Having a break but will be back soon!

Don’t worry, I haven’t forgot about you all!
I’ve had some health issues recently & I will likely be offline for another week or so.
I’ve been missing you all but I will be back with you all soon!
Take care of each other & stay courageous!
🧡💙💪🏻
#FunctionalNeurologicalDisorder #FND #ChronicIllness #ChronicPain #JointHypermobilitySyndrome

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Having a break but will be back soon!

Don’t worry, I haven’t forgot about you all!
I’ve had some health issues recently & I will likely be offline for another week or so.
I’ve been missing you all but I will be back with you all soon!
Take care of each other & stay courageous!
🧡💙💪🏻
#FunctionalNeurologicalDisorder #FND #ChronicIllness #ChronicPain #JointHypermobilitySyndrome

10 reactions 3 comments