FND causes and how to advocate? A lit... - Functional Neurol...

Functional Neurological Disorder - FND Hope

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FND causes and how to advocate? A little heartbroken...

acalandra995 profile image

Hi there,

I just had two hospitalization stays this month for all the FND symptoms. I had an attack out of no where, it came on suddenly and have never experienced anything like it. I currently have no reflexes in my feet, left sided numbness, tingles in my check and lip, and weakness to the point I can not use my feet.

The thing is this, for the last year I may have had early signs of what ever is going on. My vision has decreased over the year, I had an abnormal VGN saccades test, and intense nerve pain under my ribs that shoot down to my abdomen leaving it numb. More recently, my nerve study did come back a little abnormal.

My team of doctors has not taken these concerns into consideration as they have been focused on the new sudden symptoms leaving me physically impaired.

I was told chronic stress has given my this "FND" diagnosis, but I have not gone through any recent stress. Of course we have our every day stressors, but I manage stress well and I am in such a great place. I just graduated college and have enjoyed the last few months by taking a gap year completely for myself. There is no emotional distress and there has not been any. I have never been diagnosed with depression or anxiety. I also have great techniques to handle everyday stressors like using oils, yoga, friends, exercise, etc. I can not exercise right now because my symptoms are amplified. I was told physical therapy would "retrain" my brain and the more I walk would improve my symptoms. After any kind of movement, I am left with weaker limbs and tremors.

I am clueless because I am feel like my past history is not being validated. How do I advocate for myself? I see the movement disorder clinic at the end of this week. And I will get a second opinion from another team as well. If this is truly FND what causes this? Is FND just a given if doctors are not sure?

Thank you for your kind words. I went from being a college athlete to this. I am heart broken and hope to hear from you.

Best,

Ashley

4 Replies

Stay strong, research and always arm yourself with information. Trust your self.

Have you had a brain and spine mri scan to confirm there is no demyelination going on due to your eye sight changing before this sudden attack

I'm really sorry you're dealing with all of this. There's been some new research that indicates a lot of the time, there isn't a psychological component. Your signals are getting crossed, and you need to un-cross them (or that's how I look at it).

My symptoms were very similar to yours but they've improved quite a bit. Have you had your B12 tested? Mine was low, and it seems like that's what kicked this all off (as best as I can figure out). PT and OT has helped me a lot, as well as meditation (as bizarre and hippy as it sounds). This DOES get better. Keep advocating for you. And I don't know if you'll ever get answers as to what causes FND in the first place. My general practitioner explained it like this: "We believe you. We know something is going on. But medicine may not have the answers on how to fix this yet." As frustrating as that is to hear, at least I was acknowledged.

I hope the movement specialist is able to help. My nuerologist is pretty useless when it comes to the FND thing. But he did find my vitamin deficiency pretty quickly, and he got my migraines turned around when I had been suffering with them for 10 years. So I'm a little hesitant to switch when he's fixed these other issues. He's one of those doctors who stands by the idea that he can't treat what he can't see. It's frustrating, to say the least.

FND, especially FMovementDisorder (FMD) is supposed to be diagnosed by positive physical signs that the patient exhibits. What is the name of the movement disorder clinic that you will go to? if they diagnose you with FMD/FND, ask them by which positive signs the diagnosis was made. Where were you diagnosed?

FND might not be caused by chronic stress. It is often caused by a perceived or real illness, but not always.

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