Dr Jon Stone research

[DNE92]

Hi

There was mentioned somewhere in the past on here that Dr Jon Stone had done a large scale project into FND and had now published his report. Does anyone know where I can find it or what is was called?

It would be a great help.

Thanks

Lou

[andyglasgow2016]

Hey!

I heard the same but haven’t seen the report

I will try track it down for you though with people I have connections with

Hope you’re well as can be

Andy

[DNE92 Moderator FND Hope UK in reply to andyglasgow2016]

Thanks. Saw Dr Stone today. I wasn't in the best of moods because I'd already had a seizure first thing in the morning following yet another sleepless night. Anyhow I questioned him on something he had written saying that it suggested that FND was not a rare disorder. I said that he was making such a comment within a clinical setting but not making it clear that outside a clinical setting it was. I think he may thought I was being a bit pedantic but hey I'm a solicitor and have loads of experience drafting legislation so clarity is very important to me. And I explained to him that I don't want to tell people my disorder is rare if it is not because we are constantly subject to derogatory comments by health professionals as it is and I do not lie and so want to be clear that when I say it is rare then I am being correct. And it is rare. We then had a comparison with rarity of MS and we agreed that that was rare. I did naughtily retort that people with MS die early and that was probably out of depression with the system. Like I said I wasn't in the best of moods - FND is just not only ruining my life but is putting constant pressure onto my family. They are terrified that if I go out alone something awful will happen to me during a seizure. My daughter who is only 16 was in tears and totally distraught tonight because her and I went to the local shop to buy things and she thought I was going to have a seizure because I was going a funny colour and starting to walk slanted to the right.

I have also moved to Biggar just 12 miles from my previous address and then he thought that seeing me may prove problematic because of the move because when he wrote to my GP they wouldn't see his letters or something along those lines. I pointed out that he is one of the UK specialists and so I wish to continue to see him and medical records are all digital now so that they can be accessed by a health professional no matter where you live. I think his knowledge on NHS computerisation is skewed. I know a very senior person involved with NHS computerisation so I intend to find out more. He said he would still see me because he said I needed a point of contact but mentioned a neurologist at Glasgow that I've never heard of before.

Sorry about the rant - sometimes you have to wonder why we go to these appointments as they don't move things along for you. My joint probs he said would need to be dealt with by my GP as although I had them x-rayed and they were clear for arthritis (thank goodness) the x-ray wouldn't show soft tissue damage and I shouldn't necessarily just assume that it's just all part of a new progression of FND symptoms. I told him that I'm a stoical person and only finally went to my GP because the joint pain has now started to interfere with my daily life. He agreed that I was stoical. I'm now having to wear a thumb splint and even that doesn't fully help - I just bought it myself. Just getting quite sick and tired of sodding appointments. And every time I go to my new local surgery I just keep having seizures - they've even now set up special arrangements for me when I have to go in. And it can't believe it's stress as one of the seizures came on when I was simply chuming someone along to their appointment.

Sorry again about the rant. Would be nice to meet up again and I promise to be more like my old gallows sense of humour.

Cheers

Lou

[Ailsaw in reply to DNE92]

Hi I am surprised at that as I was told it is a common condition and it states that in the booklet they give you , however I have found quite the opposite and pointed out that nobody had heard of it including a top consultant at Falkirk hospital and even an Italian neurologist at the vic in Kirkcaldy. They really do need to clarify a lot of info on it and I am currently part of a test group trialing the effect of CBT for people having seizures, results won't be published for a while yet.

[Blue80 in reply to Ailsaw]

I got told it was a rare disability and only 30% get diagnosed I haven't been given any leaflets or information.

[Blue80 in reply to DNE92]

Hi, I've heard of this Dr Stone on other posts who is it? And is he a specialist in FND? I've looked to see if he has books and can't find anything .

[Dot50 in reply to Blue80]

Hi, if you go to the fndhope.org website, go to the menu and click on webinars. Scroll down and look for Jon Stone. Also he set up the website

neurosymptoms.org, and there are some clips on youtube where he talks about fnd.

[Dot50 in reply to Blue80]

sorry! Wrong info - I checked fndhope.org for webinar by Dr Stone, it's Dr Edwards who is on there. (worth watching) Dr Stone sometimes does a live webinar and these are announced a few weeks before so people can send in questions. But they don't appear on the site afterwards. I checked youtube and he is on there.

cheers Dot

[Dreamgnome]

Here is the book you are asking about. It is essentially a text book about it and costs hundreds of dollars. elsevier.com/books/function...