First Post

[dumbo2003]

When I was 12 years old I broke my arm in four places. From there it was a struggle, as right after my arm was casted wrong causing pain. While most kids my age were playing and worrying about high school, I was spending months on end in hospitals trying to figure out why my arm had stopped moving and the pain.

I am now 20 years old and have been dealing with this all of high school into college. I’ve been told I was crazy more times then one.

I had heard of functional neurological disorder before but my doctors always wrote it off as “mental”.

Today for the first time in my what has do be hundreds of hours of doctors appointments, was the first time a doctor sat me down and told me that they believed me and that I wasn’t crazy and that she would do everything she could to help me. That FND was real and my struggle was real no matter what any test or doctor said.

I immideatley broken down. I’m breaking down writing it. Hearing that after so long was so overwhelming, I’d never ever felt so heard.

Even now, I still feel isolated alone and confused, I can’t understand why this is happening. Part of me feels like I’m doing it when I know I’m not, but that’s what I was conditioned to learn. I’d really love to talk to someone else struggling. The hardest part is explaining it to others to make them understand. I just don’t want to be alone, I want to finally move on.

[Jofisher]

Bless you that was such a young age as well to have been dealing with all this, you are not alone and many if not most of us have been harmed by those health professionals who are still living in the dark ages and don’t understand or want to acknowledge this condition. Remember you know this is real because you live it everyday spend time with people who are supportive and understanding and avoid those who have a negative impact on you easier said than done when it’s family but speak to the family and friends that are important to you when your ready and explain what it’s been like dealing with this and how you want to move forward and how they can help and support you with this. Be prepared for things that aren’t always easy to hear but work through it and do these conversations when things are calm and settled. I wish you luck with your journey Best Wishes Jo PS I would love to know where you went to get the positive knowledgeable empathetic non judgemental experience you did from this health professional and well done to them to informing themselves we need more health professionals like this.

[CreativeBird in reply to Jofisher]

Hi Jofisher

I totally get where you are at with the feeling of being misunderstood and not being heard.

FND mobility symptoms for me go back to my early childhood (I suspect from my mother's trauma when I was a newborn) I then took a very long time to learn to walk and I have memories of being laughed at when I clumsily made another lump on my forehead right into my childhood (I still have these lumps as a 54 year old!).

As a nine year old, I was dragged in the stirrup a few miles/kms by a bolting horse, leaving me with extensive tissue damage, head fractures and neck injuries. 4 years later one of the first Australian chiropractors got me functioning better again. Although I was left with complex PTSD and severe dissociative symptoms I now know (as of only 2 months ago) was life-long FND!

So numerous flares during my life has put me in ambulances; then cast away with many condescending accusations, from even cardiac specialists that "these types (people like me that have had to adapt self-help tools to calm themselves) can drop their blood pressure (to levels undetectable with monitors) with meditation "to get attention"; and so often I was sent home deemed a hypochondriac with a myriad of FND symptoms; sometimes with all the normal test results validating my "hysteria"! Then I would have years of limited mobility and endless hours of sleep paralysis, surrendering to the fact I may indeed just die alone; and I got to actually be OK with it!!!

So anyway! I'd like to bring light to the fact FND is being more recognized now.

This current flare, which started over 2 years ago (with an expensive remote ambulance ride, to an ER/ED discharge shortly after); for me, more recently took me through a self-driven strategic and assertive tack, with some assistance from my GP (after years of choosing to not seek to see a doctor) who believed my symptoms were "mental" (rightfully so because it is a big part of FND!!) At least he was compassionate!!! So, after demanding: another full MRI (3rd in my lifetime); and a neurologist referal (3rd in my lifetime; and being really painful for 7 neurologists contacts I was given to seek to accept my referral) I got one, within a month instead of 10, who told me I had a hereditary form of ataxia but the $2000 neuromuscular gene panel I should seek would confirm (I am still waiting on those results!), and after a battery of every normal blood test the (FND) symptoms really kicked in (every show bag item!!). Duelly, I was stricken with the added anxiety of possibly deteriorating with the same MSA my father brutally passed with last September.

So then, my husband and I put me on a plane to my nearest capital City (Brisbane); (sensory triggered seizures all the way)); got a (normal) EEG of the seizures within an hour of getting off the plane in an airline emergency wheelchair; sat waiting in a hotel alone for 5 nights waiting to be admitted to hospital for observation; then to be told that my GP and neurologist decided I wouldn't be admitted as planned; and that if I was that concerned I should take myself to an ER/ED and see how I go!!

Well, after a total meltdown, I put on my assertive warrior armour and got a taxi looking like someone with cerebral palsy who'd lost their wheelchair (on my cane) to the Royal Brisbane Womens Hospital ER/ED; actually got put in a wheelchair; triaged quickly; got an angel in a GP who took videos of the seizure I was still having, and worsening for the chaos that is a city hospital ED/EF. Every little sound was triggering. Anyway, an army of angels mustered me into the neuro ward later that night, and got a team of neurologists meeting over my conundrum; and within 48 hours I was diagnosed with a resounding FND!!! I think they were somewhat perplexed over my total acceptance and pleasure of having an explanation! Hellyeah!!! for being "heard" for the first time in 50 years!! It all made so much sense for me as a complex PTSD veteran. I even received my first OT and physio attendance while there.

This Thursday (2 months on) I fly back to Brisbane for my first OT assessment after my first neurology clinic review. I may even pick up a 2nd hand electric mobility chair I have discovered there so I am no longer housebound. My husband is wonderful but at the moment, we live in a 2 horse-mining town in the middle of nowhere so housebound isn't so bad but not so good for FND in the long run. I could go shopping with him. Yay!

OK, now I have overstimulated myself and brought on a heap of spasms preventing me from ranting "my story" any more for now.

I am happy to share my insights into this challenging way of life if you are interested. Just reach out. I know the loneliness :-). And I do know a heap of what tools help me manage the symptoms into somewhat manageable ways of living and acceptance.

Chin-up

Blessings

[Lecture]

there is no available reasons to justify why your are ill. To curious people you may just say : I've got a neurological disease with no explanations.

You need compassion, not curiosity