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Functional Neurological Disorder - FND Hope
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Research into FND

Hi Peeps

I said in an earlier post that I asked my Consultant Jon Stone about research going on in to FND. There is a very long book on the whole area - I'll send a link soon.

He also sent me a link to an International Conference in 2017 on different types of research going on into a range of neurological conditions including FND. The link takes you to abstracts of papers accepted for the Conference. I am making my way through them - there are a lot and some are very statistical based (not my strong point at Uni) but it gave me hope that there actually is research into our condition. The link is FND2017.org

He also mentions going to the neurosymptoms.org site which I'm sure many of us have been to and which give good guides (in layman's terms) to our condition.

Me - sodding still having daily seizures. I wondered whether if we felt a seizure coming on and immediately caused pain to ourselves (not some awful pain just something sore) that that pain signal may see off the seizure. I was going to ask Jon Stone but now realise that this wouldn't work. I like my tattoos and just a couple of days ago had a whole 7 hour tattooing session with just one short comfort break and a few nibbles on a chocolate bar. The tattoo was on my chest and sternum which are the most painful places to put a tattoo. I duly had a seizure while being tattooed but it was luckily one where I am totally paralysised from head to toe, can't speak and can't open my eyes but still feel pain totally normally. I told the tattootist about my FND and that if I had a "quiet" one just to keep going. So he did. Love the tattoo - he's an international award winning tattooist and I had travelled all the way from Edinburgh to Reading to see him. I was also very knackered from the journey so that probably didn't help. I then went on to have 6 more seizures on travelling home and in the house.

So hope we are all still trying to cope as best we can. I keep developing new symptoms to the ones I already have so some days you just feel like giving in. Me - I just keep looking forward to another 7 hour session which will be late next year with the same guy although hubbie doesn't know yet. But hey ho my body and one which I wouldn't wish on my worst enemy.

Will do a new post with the book link.


Lou x

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