Been Diagnosed with FND

[Cazanne65]

I was diagnosed last nite with FND and was wondering how it could effect my life, some of my symptoms are stroke like, balance problems and some memory issues, will I be able to work and drive again?

[Steeler1969]

Hello and Welcome. I was diagnosed with FND about 6 months ago. My symptoms include balance issues, memory, headaches, fatigue, etc.... . I have had these symptoms for more than 3 years. They are ever-present and increase in intensivity with activity. Anyway to your question. I had the same question for my Neuro after he diagnosed me. His response was, don't waste your time and energy thinking about such big goals. You should focus on smaller accomplishments such as learning to live safely in your home and finding things that interest you. You have a long recover ahead of you so thinking small is the better and more positive approach. When I pressed him he told me it was unlikely I would fully recover.

I know this is likely not what you wanted to hear but it was what I was told. I've learned from this site that we are all different so my story might not be yours. The take away is to focus on things you can do and master them and maybe the other things will come as a result.

It's a frustrating reality but it is what it is. I've chosen to focus small. It's a daily challenge and some days are good others not.

I wish you the best with your journey.

[boazk]

Hi I have had conversion disorder for three years now. I initially struggled with some stroke like symptoms, as well as with seizures, paralysis, and more. I will say that some people recover quickly and their is hope. I personally have had many ups and downs with my symptoms. I am thankful that nothing has been permentant nor have I ever had an episode that lasted over a day straight. I think you will find more answers as time gies on but do your best to keep working towards normality in your every day life. It can be achieved, at least to some extent. I was diagnosed in 8th grade and I’m a high school junior now. I hope things get better for you.

[Ccaldwell]

Thank you the 7thchakra.I think this post should be submitted to fndhope.org . It needs to be there for anyone newly diagnosed to read!

[Ccaldwell]

You could go to the contact form on fndhope.org and send an email to Bridget. She would know from there.

[shirleysgirl2016]

Hey. I got diagnosed in January, after suffering for 2 years and having to have a mental breakdown for a doctor to take me seriously. I was off work for 4 months ( I work with SEN kids) but I started back 3 days a week about six weeks ago. It’s all about realising that you won’t be able to do all the things you used to do, but you can still work if your up to it. I’m on a whole cocktail of drugs to get through the day, but it is important to me to be back at work. It won’t improve overnight, it’s very much trial and error medication wise, but give it time and if you want to work then go for it. Stress is a major trigger for me and I’m very much aware that I’m heading towards remission now, but I won’t be like this forever. Listen to your body. I ignored mine for a very long time trying to muddle through and it just gave up. There can be light at the end of the tunnel, personal I won’t let This disorder define me but we are all different. Just don’t give up!!!! Wish you luck with what ever you choose to do 😊

[RobertWT]

Thank you 7thchakra. This amazing, clear and honest appraisal of FND deserves a wider audience. FNDHope perhaps?

I had intense physio in St George's Tooting after 15 months of being 'messed around with' by the Irish neuro-clique (I had a post op chemical clash which brought on serotonin syndrome - we are still trying to establish (on the balance of probabilities) the causal link between the SS, myoclonus, 2 subsequent cardiac arrests as trigger of my FND.

Trauma seems to play a huge element and I had this by the bucketful.

Still - on the positive side, thanks to Prof Edwards and Glenn Nielson (wizard physio at St Georges) I have made progress.

Amazing side benefits too. My diabetes is now 'at a level of a non-diabetic person' -in two months since treatment my insulin has dropped from 20 units twice/day to 4 units and bolus down from 70 to 64. My bowek habits have returned to normal after 15 months of chronic constipation.

All this explained by (in FND) my body (autonomic system - triggered byvthectrauma in Nov 2016) had maintained a constant 'fight and flight' attitude. Intense physio re-taught me that I could exist in 'rest and digest'. Hence the return to functioning of my pancreas and my digestive system.

So my message is that there IS hope. Find the right neurologist. (I was effectively abandoned by one consultant here in Ireland - he told my GP but not me that he didn't want to treat me any more! - and refusals to treat from three others.

Hence I came to London. It was worth it. My life is improving. My walking is improving (although it is still early days) and I am actually considering getting behind the wheel again.

So yes. There can be improvement. Maybe my walking will always resemble a Thunderbirds puppet but WTF I am alive and I can continue the struggle, one day at a time.

Best regards.

Robert WT