Newbie just diagnosed today

Hi everyone. I was diagnosed with FND today and am trying to learn as much as I can about it. I'm 35, and was hospitalized last month for stroke symptoms - right side weakness, face was partially paralyzed with speech issues, balance issues, etc. Scans were negative and that led to all the testing and evaluation that got me to today's diagnosis. I'm starting PT tomorrow. Any advice for a newbie - anything you wish you would have been told when you were first diagnosed? Appreciate the feedback.

8 Replies

  • First thing - FND is an unusual condition that expresses differently in different people. Second, while there is now a way to prove the diagnosis(it used to be a diagnosis of exclusion), there are still many people, including doctors, who don't fully understand the condition, can't explain it well, and/or don't know what to do. There are also professionals who do have a strong understanding of how FND works. and should have some useful information for you. Also, the most important thing with this is to listen to your body and trust your instincts! So glad you were able to get into PT so quickly - at this point certain forms of PT are among the most useful things to do to improve your circumstances!

  • Thank you!! My neuro gave me both of those websites and said similar things - said I need to become very educated because many providers may not know what it is, and that those sites were good resources. I'm really looking forward to PT and hopefully gaining back some mobility! Thanks for the welcome.

  • also, if you haven't already, you might want to join the facebook group for FND hope - there's a pretty active group on there, and it's pretty supportive

  • Hi I'm Ailsa I have just spent the most horrendous nine weeks of my life. Started with up to 13 seizures a day several hospital trips and doctors and consultants who don't have a clue as to what is wrong. Still on 12 week plus waiting list for a neurologist and although getting better slowly I just feel so lonely and isolated.

  • That sounds really bad. Sorry to hear that but you are definitely not alone. This is a really good to site and group. Love and prayers xx ♡ :)

  • Thank you sending you lots of hugs 🤗

  • Hello- I had a similar start being hospitalised after seizures with stroke like symptoms and had lots of tests. 3 months on I've learnt a lot and been through many emotions. Certainly better than I was but it's a long winding road. Good luck with the PT. I've found pacing and mindfulness really helpful. Best wishes

  • I was diagnosed a few months ago. I have different issues to you such as tremor, pain, spasm, nonepileptic seizures and various others but I also have One sided weakness, speech problems and balance issues. I am much further down the line in the respect that I have had symptoms for 3 years though they got much worse Last year. I do CBT which I find more helpful than expected just in terms of learning to deal with how many adjustments I've had to make to my life but for what it is worth, I am now seeing a physiotherapist in the neurology department and this is making huge difference to me, bigger than anything. Don't get me wrong, it is a very slow process but at least I am headed in the right direction so good luck and I hope you are soon too

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