I've just been diagnosed with FND - I know nothing about it apart from how it has invaded my body and I now struggle daily with rotten symptoms.
I don't want to consult Dr Google and scare the bejeesus out of myself lol decided to take the sensible route and talk to folk who are in the same boat.
I'm in the early stages of a probably very long road of referrals and treatments to assess and manage my symptoms, well that's what my neurologist told me at least. I'm just hoping that help is really out there as this is damn hard.
So - hi 😊
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Talulla40
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It sounds like your neurologist is better than some from what you’ve said, rather than just being handed the ubiquitous scrap of paper with neurosymptoms.org scribbled on it and then sent packing.
I hope you’re not too thrown (or become so) by the dx - do look at that site above and fndhope. Some of the stuff out there is outdated.
You are not alone with the daily bodily invasion of rotten symptoms - someone here will relate.
Thank you! I have to say I was almost send out of my Neuro appointment with a printout and nothing else until I broke down in front of her. I'm not usually someone who loses it like that - but after so long feeling ill- all the tests which were centred on MS which came back clear, all the anxiety and build up - I wasn't prepared to be dismissed. So unlike me lol anyway then came the FND diagnosis and referrals to physio and Neuro psychologist for now.
I don't know what to expect help/treatment wise and from what I've read - it's not great!
I think just being able to talk it through will help a lot - so here I am 😊
WOW you got a 'treatment plan'! Keep it up and get as much help as you can, if you can use the tears to get this do not feel ashamed many of us have already hit the wall of being sent away to deal on our own.
Sorry to say the best info is on Neurosymptoms.org. There is no best practice for this disease - just manage your symptoms as they affect you. The best general advice is to give yourself me-time and not to stress over the next symptom.
The big thing that I found helped me is that a researcher found a difference in the brain, unfortunately it cannot be used to diagnose us but it shows there is SOMETHING different in the fMRI this is not a psychosomatic disease though many health care professionals think that and may behave as though it is all your fault. Big Hugs in advance you will need them!
Thank you! It was a bit of an ordeal with my Neuro- but she came through with a physio and Neuro psychologist referral in the end when I broke down - was pretty mortifying! In for an age of a wait though.
Thanks for the hugs - it's all a bit bewildering at the mo and I'm anxious for the future and what it might bring - but I'll think about that when I've got my head around the diagnosis and how little help there seems to be out there for us 😞
Well my dear. If your just starting out, and can get help early, that is awesome! One thing I Definately recommend is finding a therapist to talk to. I remember thinking in the beginning that the docs were all Nuys for sending me to one, especially because I have gone to so many that have just been a bunch of quacks that caused me more anxiety to go see them than they helped. One guy had the nerve to say, if I can't fix you in 4 visits I won't waste your money. I'm glad he didn't waste the money that is for sure, because he just did the same old crap that others had tried and didn't work. Find one that works for you. One that you can connect with, and help you. I have been with one now for 4 1/2 years now, she has done so much for me, and gotten me through a lot of pain, anxiety, depression that this disorder causes, she is a great listener, but also talks to me, and helps me through it. Sorry so long.. I started having issues oh my gosh, I just realized it has been 9 1/2 years ago now. I wasn't diagnosed until I was already 2 or so years into it, so the sooner the better. My symptoms have changed so much throughout the years, from frustrating, to horrible, and back to somewhat frustrating. But I do have good days too. I am back to being able to get around, my big flare ups are far and few in between, thank goodness, so there is hope, my biggest advice is to never give up hope, keep trying, and keep smiling. It is certainly better than being depressed and crying. Get outside as much as you can. And believe you can beat this.
Sending much love, hugs and faith in you your way.
Being newly diagnosed, I'm still getting my head around what this disorder is and what it will mean in my life so I really appreciate your advice.
I've had symptoms on and off for years but the past 1 1/2 years has been extra tough. At least now I have a diagnosis that I can confirm with my employer etc and explain as best I can to friends and family.
I'm shocked at how little help, support even understanding people are offered - god I hope that changes 😞
I'm so grateful to have this space to come and chat and ask questions eith some lovely people.
Don't settle for a diagnosis of FND! That diagnosis just means that your doctor has no idea what is wrong with you. It's a diagnosis of exclusion, not factual information.
The Mayo Florida doctors first diagnosed my son with depression, then FND. They are wrong...and many doctors are wrong all the time. I kept telling them that I thought he has autoimmune encephalitis (or paraneoplastic) but of course they just think I'm a crazy desperate mom. I do Google his sysptoms, but I only read what the top studies show. He has had thyroid nodules and problems for years, but the Mayo Fl doctors told me that the thyroid could have nothing to do with it. Almost 3 weeks ago he had his thyroid removed because of multiple nodules and possible cancer. He has made many improvements since and Inthink he will make a full recovery. Doctors can be wrong and often are.
Have you had the autoimmune testing by the Rochester Mayo Clinic? Any doctor can order them and have them sent to Mayo Rochester to see if you have autoimmune encephalopathy. It's a lot more common than they used to think. Also have a full workup on your thyroid, including both antibodies against the thyroid, TG and TPO.
I Hope you FIND the real answer to your illness. Getting a FND diagnosis (very much like a depression diagnosis) makes it very hard to find help. I wouldn't tell the next doctor you go to that you were diagnosed with FND because it's likely he will just jump on that bandwagon too.
My goodness what a battle you've had to get the right diagnosis for your son - he's lucky to have you and I hope he's on the road to much better health!
I'm based in the UK and am trying to find out as best I can what this all means, my options etc. At this stage I'm just trying to find a way to manage my symptoms. Everyone was convinced I had MS and the clear MRI etc was a shock - now that I'm off that path I'm kind of drifting unsure what to do next but I'll find my way - where ever it leads.
Every best wish to you and your son
Well hello. I'd like to say welcome to our lovely little group of people who have their own crap to talk about, seeming how little help we have other than each other.
1st location. USA UK or Australia? Ive learned that USA has big health system issues and that has an impact on resources and treatment. 2nd resources. Here FND ACTION UK website, and neuro symptoms.org. ALSO YOUTUBE theres 2 women on there Larissa Anderson shes based in Portland Oregon and Functionalenny shes aussie. She has great tips for us folk. Another is dis-sociated the full documentry.
I've personally have been only having one diagnosis of a neuro disorder and it's PNES or NEAD or FND or Conversion disorder. Other wise im a 33 year old male in USA who works full-time as a mechanic. I know you don't know whats going on or what your future holds but I can tell you it gets easier to handle if you have support. My symptoms are myoclonus jerking, blackouts/stares and faints, dystonia, ive had siezures, I have gait dysfunction and walking problems and speech problems. Non of it is easy but I know that it gets easier to deal with if you stay calm in your head as the symptoms happen.
Example my movements happen and I watch tv like eh whatever. Or when I talk to people, same thing. I had to get used to the NEW me. I could be misdiagnosed like other people but i've learned that its all about PERCEPTION. I may be physically disabled but that doesn't mean I am in my mind. NO EXCUSES.
Thank you for such a warm welcome to this crap talk club 😊
I'm based in the UK, Belfast and i work in mental health - irony!
I've been well clued up on what is available for MS patients as that is the diagnosis I was leading towards- but that didn't happen and I'm now in the 'well what do i do now' stage!
My symptoms are similar to yours, myoclonus, tremor, restless legs, vision problems, swallowing/breathing/ voice, terrible fatigue, pain,gait issues, altered sensations and a few others. Some come and go, others are like a house guest who won't take the hint! It's pretty lousy isn't it when your body is being an ass and stress etc ramps up the nonsense.
I'd never heard of FND, haven't had enough time or info to accept or agree with the diagnosis- but at least it's something, something that I can learn and talk about - I've been in limbo so long I'm almost grateful to have a kind of vindication.
Anyway, it'll be great to chat and reach hands across the ocean 😊😊
I'm a newbie too, so will be good to hear how your getting along. Went to hospital with suspected stroke last week, neurologist said it was a functional symptom. I got the piece of paper with neurological symptoms written on it when I was discharged the next day.
Going to see GP today and ask for physio/OT help and get a sick note as I think I will be off work for more than 7 days! I've hired a wheelchair to help me get there as cant walk properly or more than a few yards, looks like I'm walking on the moon.
I have a feeling I may cry as well if they don't take me seriously.
Poor you! That must be so frightening! The only upside, I guess, is that it wasn't a stroke.
I'm still getting my head around this whole 'functional' thing. For our bodies to have such extreme symptoms and not have anything show up on tests/scans etc is a little mind blowing.
I really hope your GP is clued up and ready to help - having to hire a wheelchair because you can't walk properly needs taken seriously.
I've been putting off seeing my doc because of how my diagnosis appointment with my Neuro went - but I've finally made an appointment and just have to hope they will listen and help. Strange wee world to be thrust into isn't it!?
Anyway, I hope you have good support around you as you deal with this and I hope the symptoms start to ease sooner rather than later. In the meantime, say hi any time. I've found it helpful to chat here 😊😊
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Can anyone help??
Newly Diagnosed
Cycling and FND
