There’s a website called www.fndhope.org that patients are directed to. On the face of it, this looks very professional and authoritative, but, and it’s a bit but, every page has a Disclaimer to say that basically all the information on this site might be wrong,

Fly to Turkië, I can’t even fly to Dublin. I’m 99% sure I’ve never had Covid. I’ll see what is possible regarding a PET scan here, thanks.

I’m not female and I did have an EEG, I’d forgotten about that.

No, no treatment plan or way forward. It was a hit and run diagnosis. A trip to Lourdes was suggested. I was referred to a therapist but I can’t say this has been fruitful. After finding the book by Suzanne Chapman, I’ve finally found someone with my shared lived experience.

An analogy I’ve used with medical people is to imagine getting into your car to drive home and you realise you can’t drive but you drive to work without a thought this morning. There are too many pedals, buttons, and dials to manage. Do I need to put in the key, what side of the road do we drive on etc.

i found the consultant particularly obstinate in her diagnosis, it was like walking into the GP and saying my right knee hurt but the doctor said ‘Oh, no, its your left knee that hurts”.

I haven’t sought a second opinion. I have looked into this but all roads seem to come back to the same clinic. Going private looks expensive. There is a clinic in Dublin but getting there would be a challenge but at least I’d be back home.

One interesting aspect to my case is that I’ve had task specific focal dystonia in my right hand for years, long before this FND/FCD problem. The condition is also called Writers’ Cramp or Scrivener's palsy. I cannot write with a pen, no matter how much I try. FND is often described as a disconnect between your brain and body and with focal Dystonia this seem right. I want to write but I can’t even get the pen onto a sheet of paper. Focal Dystonia is a cruel disease as it often targets the movement you rely on most. Musicians often get it, trombonists get in their lips, singers get in in their vocal cords, pianists get in in their hands. These are career ending problems. The keyboard player Keith Emerson form Emerson, Lake & Palmer developed Focal Dystonia and ended up shooting himself.

There are similarities between focal dystonia and FND in my case.

1. They both came out of the blue
2. you can’t think the problem away, no matter how hard I try I simply cannot write.
3. Any position I put my hand in that resembles holding a pen will trigger the dystonia. I cannot use a plectrum with a guitar as that position is too close to the writing position
4. it’s incredibly task specific and my cognitive problems are also very task specific.
5. Focal Dystonia happens in a flash but then never change, FND seems to be the same. The disease never progresses. The problems I had on day one are exactly the problems I have now.
6. There’s no cure for Focal Dystonia, Botox is a last resort.
7. Focal Dystonia doesn’t show up in any test or MRI scan.
8. Focal Dystonia isn’t a sinister disease, I.e. it won’t kill you
9. Ir’s a cruel disease and what I relied upon most, my clear logical thinking, seems to have gone. The lady in the book I mentioned was a maths teacher until suddenly one day couldn’t solve even the simplest equation.

The suggestions regarding blood flow as being the root cause are interesting but don’t seem to fit my symptoms. Surely blood flow would affect all my cognitive functions?

I’m not exactly sure how to reply to the comments on my post, so I hope this comment can be seen by everyone. Forgive me if this is wrong.

Firstly, I came across a book called “The New Normal. The struggles of living with FND” by Suzanne Chapman. The author is clearly British. She has various physical symptoms that I don’t have, luckily, but her descriptions of various incidents are uncannily like my own experiences. Like trying to buy bread at a supermarket but you can’t because there are too many varieties of bread. This book has at least given me the confidence to post stuff online. The book is actually quite funny too, I’d recommend it.

I got the diagnosis of FND from a consultant at an FND clinic, how she arrived at that conclusion, I don’t know. Truthfully, the consultant’s thought process was something like, I have no idea what’s wrong with this guy, so we’ll call it FND. If you’re familiar with “The Hitchhiker’s Guide to the Galaxy” then it was a bit like the computer coming up with the answer 42. FCD has been mentioned. I haven’t a clue what to do next. I’ve never had COVID.

I had the initial problems during Covid so that made access to medical help very difficult. I’ve worked with computers my entire adult life so now, not being able to do so, is very distressing.

A really difficult thing I find is trying to do something and my mind involuntarily compares this to what life was like before that fateful day, sobbing quietly in a corner often seems the best option.