Hello, I am interested in hearing about others journey receiving FND diagnosis. Did you get much testing to rule out other possibilities? What resources and coping tools have you found helpful?
For myself, it was fast and furious. I have a long history of mental illness as well as autoimmune disease. Fall 2020 I developed sudden onset of many symptoms. Multiple doctors assumed it was my Hashimotos Thyroiditis. I tried to advocate for myself, asking for copies of test results etc. One month later I was a diagnosed with FND, I was told to keep my stress low and "you'll be fine".
Just hoping to make sense of what's going on.
Thanks all.
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I have 7 Rare Neurological Disorders ,in the beginning in 1985 ,it was pure hell ,I felt as though I was a test dummy ,and my Doctors were doctor dummies ,as time went on , around 1992 .I start researching and joining Foundations that Specialized for each Diagnosis ,and presently take part and occasionally create Focused Groups ,I'm a Patient Advocate for a Major Hospital where I live. The challenges are still there who's right , who's wrong ,positive or negative ,doctor or patient ,most importantly you're the doctor that treat me the patient with patience and understanding .we work collectively to get an accurate Diagnosis ,based on my input the Symptoms ,and the Doctor's input and knowledge and treatment .education and information are powerful ,empower yourself ,Have a very informative and happy day
HiI’m sorry that you have not been supported through this diagnosis. I went to my GP after diagnosis and asked to be referred to specialist rehabilitation. I attended the Rosa Burden in Bristol...
My diagnosis was based on banging my head badly - contrast CT in hospital then private MRI. No apparent damage but so badly affected initially I could hardly do anything.
I suppose that is a benefit of living in an area where it's nearly impossible to see anyone. I'm in a regional area in Australia. Takes so much time, you get exhausted chasing. One neurologist saw me but took 8months to write a report or give an actual diagnosis. With other health problems, you just glad to have something checked off the list. My symptoms came on slowly and are still progressing. I know if I have a bad angina day, I'm going to have a jerky day. They are definitely linked. Depression also a factor, but at the moment off meds for that as trying to keep my diabetes under control. My best weapon is to find something to laugh about.
I appreciate you sharing, you seem insightful in your health. Thank you for your story and perspective.
Have you found anything that helps you feel like a whole person when dealing with multiple health concerns? I guess, for me I see different doctors and health care providers for different illnesses and I began to feel disjointed. Doctors compartmentalize me but I'm just one person.Do you know what I mean?
Health care is frustrating, when they see the symptom but not the person. I do try to understand my health, I suppose my age allows me to speak my mind. But I do try to remain focused on what I can do, not what I used to do, that changes, so I try not to have high expectations of my abilities. I do hope that today is a good day for you. Take care!!
That sounds like it would be frustrating and scary. On top of what is already a difficult time, it isn't fair for your experience to have not been taken seriously because of your age. I'm glad you were able to get a diagnosis.
If you don't mind me asking, did you get any follow up or a treatment plan or anything?
For a couple months leading up to October of 2020 I was doing a lot of testing with neurologist. And going to different doctors. But finally in October I was finally sent to a disorder movement clinic in Dallas,Texas.
I didn't have a diagnosis of anything leading up to getting diagnosed with FND. I'd spent a few years back and forth to my GP and neurologist with peculiar symptoms and eventually my neurologist told me it was FND.
I've since found out it was silicone implant incompatibility syndrome from my breast implants and this eventually led to a rare and aggressive cancer. In fact I had the cancer when my neurologist gave me the FND diagnosis and wrote to my GP suggesting I was malingering. I'm just so glad I refused to believe him and kept up the fight to find out what was wrong.
My neurologist was telling me my CSF fluid and bloods were normal when the initial bloods were showing inflammatory markers and my increased protein level in my CSF was a sign of a tumour.
Since I got rid of my FND diagnosis, I've been taken seriously by the medical fraternity. I have got sjogrens (which was induced by the SIIS.
I did have a meeting with my neurologist to ask how he managed to get it so wrong and why he disregarded the warning signs in my blood and CSF and although he never apologised, I hope he will be more careful in future about randomly handing out this FND diagnosis.
Wow! Well done for having that conversation. Like most of us I try to be an expert on my health and advocate but I go through phases - currently too tired by medics to take them on! But I will ... again...and again because
No, I knew I wasnt taken seriously and very aware of when doctors and nurses were gossiping about me. With God and my personality I was able to turn a few of them to liking me because they actually finally got to know me.The journey is extremely difficult. One day your being a productive citizen and the next you become the patient that majority dont understand . Among all the doctors I saw I came across one ER doctor that understood wholeheartedly because his daughter was diagnosed with FND , I will never forget that moment and senerity I felt from him that night. I wish only if I could have saw him before my previous journey but things went how it was supposed to . He was first to genuinely tell me my symptoms were real. Even the person who 1st mention FND diagnosis to me was lying to me when I asked , " you thought I was faking" ?!?!? Drops her head and says no.She was the head neurologist at the hospital at that but doesn't specialize in FND. Told me to see a neurologist but did not chart the diagnosis of course knowing me I ask her for info on it she just wrote it on a note card which was fine but would of been nice she placed in the chart what she thought because when I saw (neurologist she recommended) doctor it was I dont see anything say FND but of course information they get a thrill of gossiping on was in my chart. Telling you regarding visit I could type more but I'm gonna stop there. Its enough as a patient you have fears about the situation because you are also trying to understand why your body isn't working properly. Plus you never even heard of FND . I struggled for so long before I could even read FNDHOPE.ORG website and when I finally started reading website I had to do it little by little because of my condition. Nobody understands the struggle like you all do regarding this topic. Constantly retraining your brain is a task on your own.. Wish you well ,comfort, & someone who understands you.
Neurologist no. 1, said “I’m not the smartest guy you should see someone else, I can’t figure this out.” Neurologist no. 2 said maybe you just need some Xanax, but referred me to no. 3 at a teaching hospital for movement disorders who sent me to no. 4 who said they thought I had FND, but that was based on my symptoms and fact all scans and blood rests were normal, still so unsure. They told me to read a book talk to a social worker, take neurontin. Follow up in 3 mos. the book was about panic attacks and hyperventilating . I’m not having panic attacks. The anxiety I have and stress is from medical community not taking me seriously . I like neurologist no 5, she is close, seems to listen and wants to help, the only one who finally ordered something for migraines, however she also sent me to neurologist no. 6 at yet another university hospital, who when I mentioned a previous diagnosis of FND said”What is that”. He is supposedly head of neurology dept. I’m going to see no. 7 at the end of this month. He is a vestibular specialist. I think a may have vestibular issues, or I thought that’s what it might be because of all the sensory issues, but reading all these posts, probably just the FND. Every time you see a new doc, wait another mo. or more. So frustrating. I’m going to a rheumatologist in August. Made that appt in Feb.(are you kidding me.). This has been going on for two years. I feel I’m getting the most psych help from you. So awesome to discuss with people who understand, hugs and prayers to all.
Yes, If you ever want to talk I'm here. It really helps talking to you all. Talking to any professional who hasn't experienced FND is like going round and round in circles and dont get anywhere really. I'm at my stage of why make any appointments anymore honestly.I need a break from doctors. My excitement this week is gonna be me ordering an FND awareness shirt and wearing it proud.
in 2018(june) i went to work as normal and when i got there i was told to go home as i was acting drunk(don't drink). went to GP sent to A&E 8 hours later transfered to another hospital under blue light as suspected stroke. three days in hospital and numerous tests and no answers, did see physio and they said i would need work but then i was discharged. As my stagger or gait was very bad i tend to move to the right when walking, back to GP they had to tell neurology that it was urgent before they would see me my original follow up was a year away. Because there was no cause found they thoght it was an adverse reaction to gabapentin which i had taken for a pinched nerve for only five days before.(had to yellowcard this). my Neurologist did no give me great confidence, i was tested to the limit 7 MRI's 7 ct scans pet scan lumber puncture and over 100 blood tests. they thought maybe Neurophysio may help. And did she, video of my walking(staggering) showed that i had forgot how to walk forward as i could easily walk backwards not ideal. It was her suggestion that i may have FND and i was sent to a balance clinic(3hrs testing). then finally i got a diagnosis after 17 months. My Neurophysio said she was part of a trial for physio for FND and i was put forward and accepted that was january 2020 it was an intense course 2hr a day twice a week and i learned to almost walk properly and then Covid hit and everything was cancelled. My Neurologist has since dropped me as nothing further they can do and my neurologist on the trial has advised me there is nothing more she can do and hopefully my neurophysio will call me back to finish the trial. So now i just do not know where to turn , i have met other FND patients at hospital and they all seem far worse than me. At the moment i walk into walls or lamposts have brain fog cannot think straight and forget a lot that and my COPD and GORD and now suspected long covid (had jan2021 no symptoms). currently under my GP, Gastroentrology, thorasic clinic and pulmenary rehab. i have to ask my wife what happens at the doctors because i forget about 2hrs later and i have to right lots of little notes. this how i writing this with notes. i know this is the long game but sometimes feel i just want to give up. hard to find any good points to look forward to. sorry so long i have finished for now thanks.
I can definitely point out I have a gait issues as well, I learned that I can walk better backwards too when my gait isnt definitely normal but at work I don't walk backwards cause others just gonna ask more questions. Lately my left leg has a tendency to drag and for the first time yesterday I notice my left foot was turning outwards toward the left while I was walking. Also if my brain tell me to run during the gait I instantly my gait is better it's weird but I cant run every. The note taking is definitely me as well because I have brain fog too. In the beginning of this year and in Dec 2020 I was ashamed to mention anything regarding brain fog but its evident many times now. If let my family tell it I always had a memory & hearing problem. Which why I believe I got my diagnosis of this stuff late. I am exhausted of the questions at work every time my body isnt working. I got ask yesterday is it my sugar do I need sugar. I am aware of what it is but she doesnt but she was very nice and asked do I need some sugar. I didnt decline this time nor explain myself due to the exhaustion of ppl constantly asking what is wrong. I will be purchasing a FND awareness shirt soon & that will be my excitement for what we all go thru alot of ppl dont have a clue what we experience daily. The wanting to give up I totally understand. Yesterday was the day I finally said to myself I'm gonna do my best not to care what others think about my condition and do my education thru my t-shirts.
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