#FNDandUS
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- čas přidán 20. 08. 2024
- We understand how difficult it is when medical professionals don't understand FND, it leaves us feeling alone, isolated and frustrated. Which is why with the help of Andy and others who share their inspiring stories, are helping to raise awareness of the most common condition you have never heard of.
Hear Andy's story about his experience with Medical Professionals.
if you missed any of our previous #FNDandUS videos, check out our webpage here: fndhope.org/fn...
#FNDandUS #FNDAware #LetsTalkFND #charity #charitysupport #personalstories #notforprofit #FunctionalNeurologicalDisorder
Definitely! I had 6 doctors confused by my on set tremor and couldn't give me answers. Telling me it's a medication side effect am I sure I'm Ill. It made me so depressed and question my sanity.
At my old job they all thought I was faking it to get out of work. I was once on a shift. On the ground crying in agony because my shoulders locked and I couldn't move them.
Thankfully I've seen a third neroglist who has diagnosed me. He was so kind and gave me helpful website. And at my new job I have the perfect work colleagues. They all know and are so respectful.
It's been a challenging 3 years and the future does scare me. But I don't let it bring me down as much. Thank you for your story
That's awful and I'm so sorry that you have had that experience, sounds like you are starting to turn things around my friend.. All reach out if you need to talk.
So agree life is so unpredictable not just one day at a time but often one hour at a time. That thanks for sharing your story.
You are very welcome and thank you for your support 💙
Simple, effective summary - well said sir!
Thank you for sharing. My son was diagnosed with FND when he was 15, he is now 18 and hasn’t had an attack for a year, thank God for that. But for how long onwards, I don’t know. I just glad he doesn’t have those horrible seizures anymore (knock on wood).
That's amazing news I am so pleased, stay strong and fingers crossed. 💙
Legend. Same story with me .
If we shout together someone will hear 💙
I couldn’t agree more with this video! No one understands what’s happening so it must be fake! Lol try living our life’s! Great video!
100% because its not text book it doesn't exist. I hope you are doing okay today Kev?
@@andyhill-myjourney1236 so so thanks for asking, I just take one day at a time I find that works best at the moment! But your video was like a breath of fresh air to hear someone else say what I think all the time as before I knew I had FND I honestly thought I was going mad! Test after test after test and yet nothing and when your told there’s nothing wrong I couldn’t help but question myself! Thanks again Andy!
exactly the same thing that happened to
my partner. piss me right off hard when ENTs i was soo worried that day. doing some research soo i can have more better understanding
Good morning. I have this condition too. It’s horrid. But my doctors are brilliant so I’m lucky. One day I was great. Next day my life was turned completely around. Has anyone got the FND app. ? It’s brilliant. I hope you all have a peaceful day.
Hey Sharon, FND is such a sudden life changing condition as you said.. I am so pleased your have a great doctor who understands.. The app is always very useful, I don't know if you listen to podcasts but the there is an Australian podcast called thefndpodcast it's hosted by Detti a FND sufferer and its all about FND.
My gps are also briiliant.
But hospitals , e.r dept and paramedics ...no.
They are useless and also thought i was faking even a huge chest infection.
Nhs in uk is rubbish.
I know many medical people( family and friends ) ..
..they say all good staff have left profession early .
Its only cruel, narc, ignorant people only in it for the money
..that stay behind .
I have fnd , but am bedridden with many other more serious illnesses .
Pain in the ass to say the least .
I had to leave teaching at 38 .
Grrr .lol
have just been diagnosed with fnd and they are not sure on ms yet, I'm lied on the hospital bed writing this and I'm holding in the tears, my legs go numb and tingling, blurred vision, tired and the worst Is the blocked head feeling and the tremors/jolting.. I would really like to talk to others who have this as I'm scared right now, it's getting hard to walk and my life has suddenly changed, they say stress makes it worse but how can I not be stressed and upset
I gave up with A&E too, when Nureos just did not look at me, thing have changed, and they will not give open the email from the GP sating why they should see me. I have started having night time fits, I keep damaging my wrists and head where they hit while I am asleep, but as it say FND on my note, they will not see me. and this fits are not normal for FND.
Keep on fighting and knocking on the doors of specialists if you don't agree, after all you know your body and mind.
I have non epileptic seizures and they can be horrendous dislocatimg shoulders and knees, I feel for you buddy..
You should definetely get it checked out; I too was diagnosed with FND and non epileptic seizures and before I knew I was in a medical induced coma for a period of 5 days with 8 days total in icu as I went into status epilepticus. As this happened in separate countries and despite the fact I been on medication for the seizures and while here given those reports I’m not at the moment anymore and suffice to say I’ve had my fair share of every medical encounter one could say and I do get treated differently and discriminated against because of what is written on my notes. They say it won’t but just yesterday I was doing physio for a issue on my back and they suggested you may go the route of surgery as it’s been years (was refused a scan and told everything was on my head only later to find out was a disc herniation) and then as soon as I mentioned that FND they were like oh no no no and don’t see a doctor is not necessary and i don’t think pain is coming from your back anymore - had horrible A&E experiences everything under the sun only to find out with my life almost going caput and being on a coma that I have frontal lobe epilepsy. They are more common to occur in your sleep and as the frontal lobe is fairly big sometimes smaller seizures cannot be captured on an eeg if they are coming from a very deep area on your brain. My neuro here is still unsure and thinks it’s not thus I’m going to endure yet another thing but this time I’ll be in a centre for up to 2 weeks and hopefully they will capture something; I hope they put me on eeg for at least a week as most people there go there for 3-4 sometimes even 6 weeks and I noticed most labelled as non epileptic only go there for shorter time so I don’t want to have one but if they capture one I’ll be very happy (I hope I survive and I know they won’t let me die) but my life has been so horrible thus far that idk what will be of it. Getting work is horrible, driving - can’t drive anymore…yes it takes its toll. But I really hope 1 year you wrote this that you at least had some sort of neuro test done. Much love,
Mila👒