Functional Neurological Disorder - FND Hope
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Questions for Dr Jon Stone

Hi

Sorry that I can't remember who said they were frustrated with their second meeting with Dr Stone as he just repeated everything he said in the 1st.

He's my Consultant too. I went prepared with a list of questions and a timer on my phone as time rushes by so quickly in the consultations. He wasn't at all insulted by me timing the meeting nor coming with questions and taking notes.

I asked about Non-invasive brain stimulation (e.g. ECT). He said that it really only was a placebo affect.

I also asked why I'm in the DSM - 5 300.1 which is the diagnostic and statical manual of mental disorders. I also suffer from Complex - PTSD. He said that a new manual was coming out for neurological conditions and FND would be in it.

I then listed all my new symptoms.

I find him very empathetic. I nearly had a seizure when seeing him - couldn't find a word which can trigger me but luckily it popped into my head; my husband and kids say the colour just drains out of my already very white Northern Irish face - I reckon he saw that. He came out into the corridor after the consultation and asked if I was going to have a seizure and if anyone was with me. My husband has to take me everywhere as I can no longer drive. I'm a very independent person and that is almost the worst thing about this illness. I know it says that in a city the size of Birmingham (UK) there are 60 - 90 sufferers that's 0.06 - 0.09% (if my maths isn't failing me). I'd say that's pretty rare.

Cheers

Lou

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Hi Lou

Glad it went well for you . I am just frustrated by the whole thing. Dr Stone is indeed empathic and I do believe he is on our side . It was just his repetition and lack of new information or lack of future help i. e physio etc that left me rather deflated and felt no further forward. I to have seizures and one good thing is that he has given me the chance to join a clinical trial involving CBT . I think it is also the fact that things take so long and every day living with this condition feels like an eternity. I know he does not have a magical wand and an instant cure but he is our only hope of someone with some understanding and our lifeline to finding answers .

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Like everything unusual to the NHS it all comes down to money, which is sad for people like Jon Stone. I am now waiting for my PIP assessment and already planning for my appeal of the inevitable "no we're not here to give you money". But you never know - I got a cheque from the Inland Revenue. No you didn't read that wrong they actually gave me money back for overpaid taxes. Mind you it took them a whole 2 years to work that one out. I stuck the cheque in the bank as if chased by the dogs of hell.

Cheers

Lou

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Whether in the U.K. or the US, the only folks the folks in politics are consistently concerned for are the poor suffering billionaires who are down to their last thousand cases of Dom Perignon. Weep for the filthy rich, only they truly matter.

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You're absolutely right.

It's not what you know, it's who you know in this world.

My wife can't get a Bungalow on health grounds with this FND because she's not 50 and yet we see a woman in one who walks perfectly with her nice 3 dogs.

She maybe over 50 but it's funny she has a top BMW worth thousands.

My fight continues for my wife's quality of life.

Best Wishes!

Tony & Kim 😊😊

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Good luck 😊

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Dr Jon Stone works Extremely hard for the Fnd Community, He is very Delicate to research and trying to get Student Doctors trained in this Field of Specialist medical. It does come down to funding but I know The Specialist who are working hard for us are just as Frustrated as we are and that is why when ever there is any fundraising you will see These Specialists helping Fndhope. They spare their time doing Webinars for us which are so Valuable to our members because we learn so much and members can ask questions. They work Extremely hard and I just wish and Pray for more Specialists like this in the future x I am a Fnd Sufferer myself x

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