Hi, I have recently been diagnosed with FND and I'm finding this diagnosis very overwhelming. My GP is very good, specialists etc are good but I just need support with living FND as im struggling with coping with it. I'm just after some support or make new friends which understand what I go through with FND. I live in Bristol.
Thank you
Pip
Hi Pip_louise,
I'd ask for a referral to the Rosa Burden Centre in Bristol and also contact BeeYou22 who is part of this hub. If you don't mind me asking, what rationale were you given for your FND dx and what tests were done?
I have saw a FND nurse at the Rosa Burden centre already and she has reffered me for occupational therapy and just given me support. I was had so many tests done as I was sent to A&E by GP for spasming and twitching in my legs and arms which was uncontrollable, I was saw by many doctors including a neurologist who done a MRI, CT scan tested my legs and arms, MRI and CT came back clear then I was seen by a senior neurologist so gave me a FND diagnosis. I was also given alot more tests which I honestly can't remember. I get spasms and uncontrollable twitching in my legs and arms, arm weekness and my hands lock I also get bad weakness in my legs which cause me to fall. I have alot off chronic health conditions so I'm a very complex case
Hi Pip_louise,
I feel for you - that's a lot to be dealing with and I'm glad you've seen someone at the RB centre. Hopefully they can arrange some physio for you if you and they think that would help. I hope the neurologist didn't make the FND dx on the basis of normal scan results since they are not meant to do that. I'd ask your GP (or the practice manager) for a full list of the tests you've had - and the results - so that you're not left in the dark, since that can create unnecessary anxiety and distress.
How long did it take you to get all of this done
Hi, just wondering what other health conditions you have? I have pots, aps and neurologist told me fnd. Finding it hard to accept fnd as a diagnosis because I have other things wrong with me
Talking to others has helped me, as well knowing you are not alone. Don't be scared to ask questions yourself and others.
I highly recommend The 12-week FNDcourage course that begins August 7th and is completely online. The course includes 12 webinars with an international expert on FND (webinars are recorded if you can't attend live). Afra Moenter, pHD has been treating FND for decades and has created a course and a community based on what she's learned. The course also includes 12 weeks of study groups- an hour each week to meet with others with FND and deepen into the healing work. FNDcourage is also hosting a retreat this September. Registration for both is open now and spots for the retreat are limited.
Hi Pip.Sorry to hear about your diagnosis it can be a very daunting journey.
I am 39 and been diagnosed just over 3 years. Unfortunately I am in the dark hole of the UK where the NHS doesn't have any specialist for the condition so getting treatment is really difficult but if you ever fancy a chat. It would be lovely to get to know you.
Hey, yes trying to get treatment on the NHS is tough but I luckily found treatment pretty easy but getting the diagnosis was hard. I would love to get to know you.
Hi I just joined to support a family member diagnosed last year. The numbness and spasms have stopped but the falls haven't and the last ones (about 5 weeks ago, 1 every week) resulted in bad headaches which ease by afternoon/eve. Unfortunately should be at school and as its a new condition they haven't heard of so on my second 15 day notice (2nd yr). Some association to school as he was fine after and school holidays. No OT no neuro appt yet, first referral messed up.
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