FND review of diagnosis

[eviedotty]

I would like to have a contact with Dr Jon Stone to pass on my e mail sent today to the Team responsible for my diagnosis of FND which I disagree with how do I go about this please

[210272]

If you google him you'll find his email but it's probably quicker to go via his secretary.

[Gypsi]

I don't know what your reasons are for wanting to write to dr Stone, but I can tell you this. My daughter was wrongly diagnosed with fnd and sent packing from a Dutch hospital. She was given the website and told there were two doctors who could help, and dr Stone was one. There had been one in the Netherlands too but he had falled in disgrace for acting, frankly, in a humane manner towards a patient by misdiagnosing them with a known illness which would allow them to get a wheelchair. Since we (parents) live in Scotland, we asked dr Stone for help. He turned us down because the patient was not on the NHS (so much for cooperation within the EU). In the event, it was just as well. Several months down the road it turned out that her symptoms were consistent with hemiplegic migraine, for which she is now in the care of a neurologist. By no means a walk in the park of course but no comparison to the alternative sprung on her three years ago. I am quite bitter about how the fnd diagnosis so casually delivered turned her life upside down. But it's looking good now.

My best regards,

Gypsi

[eviedotty in reply to Gypsi]

I simply want to make him aware that some doctors are misdiagnosing I like yourself now have the answer to the issues that caused the doctor to misdiagnose me and its so simple. I have an MRI scan on record with report showing pinched nerves and age related damage to the discs in my neck which has caused this diagnosis. I feel that the doctors who are driving this here in Scotland need to be accountable and if the training they are getting is this substandard then it needs to be addressed by who ever is doing the training and from what I can see these 2 doctors are the ones in the driving seat. That's my reason. These doctors cannot be allowed to turn people's lives upside down in this way and I feel really strongly about this

[Gypsi in reply to eviedotty]

Absolutely!!! X

[Hidden in reply to eviedotty]

Things are very bad with neurology here in Scotland. Even with biomedically confirmed neurological disorders or serious systemic autoimmune diseases, people are being landed within a diagnosis of “functional” overlay.

Some have serious reactions to medications overlooked in favour of a diagnosis of FND.

So I agree this has to stop. But those who have a vested interested in researching and diagnosing FND are very good at covering all bases. Their professional reputations are on the line after all so we should not expect them to be reasoned with intelligently.

I think, with a general election coming soon - your best bet is to contact to your local parliamentary candidates about this matter. It could be argued that this is devolved issue because health boards with large deficits are always looking for ways to empty busy clinics if anyone who doesn’t have a clear cut neurological or other type of disease. There are no out of area second opinions or centres for rare diseases so it’s very easy to get away with diagnosing conversion disorders here.

It is far easier and cheaper for the NHS to diagnose someone with FND and discharge them than to keep investigating them or simply admit you aren’t sure but it isn’t X,Y or Z.

And if the patent turns out to have something physical wrong with them then the neurologist can just say that the symptoms were “functional” overlay. It’s win win.

Professor Stone writes about the dangers of people with neuro symptoms being over investigated. But I would argue that many more with neuro symptoms are going incorrectly investigated or under investigated. It’s something a good investigative journalist could perhaps take up if anyone knows one?

[artmom]

Could the General Medical Council be a route?

[210272 in reply to artmom]

I tried them - they were not helpful.

[eviedotty]

up date...I have emailed the neurology Team in charge of my care and asked for a full explanation of why they think I have FND...noting all the points from the diagnosis criteria as outlined by Dr Stone...I have now got my journal back from the printer and read it through again and was shocked to see how many times I referred to a trapped or pinched nerve type pain...the neuro team got this journal emailed ion a weekly basis and so why was this not picked up or even looked at in respect of a physical exam the way it was picked up with the OT...I have an appointment with my own doctor tomorrow to confirm my suspicions of a pinched nerve situation that requires further investigation as there is something structural going on here thats pretty dramatic in that simply placing my arm and hand in a specific place brings on shakes os severe that it actually looks like a seizure so this is getting a bit scary given history of cavernomas that can grow in the spine along with history of cancer...need an answer to this one and soon as it takes out my head, neck, shoulders and arms and does so at quite a rate time wise and leaves considerable pain after the event...the neuro doctors actually told me they dont have time to read emails???... about an ongoing care plan???