Anyone challenged Doctors who don't k... - Functional Neurol...

Functional Neurological Disorder - FND Hope

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Anyone challenged Doctors who don't know about or understand FND?

DMA1664
DMA1664

Hi all, I'm interested to find out if anyone has challenged Dr's on their knowledge or understanding of FND and its associated problems, how you went about it and what their response(s) were?

I've seen my works doctor (who is a GP not a specialist) three times now since falling ill again in April and being off since May. When I've spoke of my symptoms he's spoke in a manner as if to say I'm making it up. A recent example being, I mentioned I've experienced 4 or 5 episodes of blindness in my right eye. He scoffed and said "what do you mean blind?". My response was "you're a doctor, as in can't see". Even my Mrs noticed how he scoffed and said it as if I was lying. It really angered me and I felt so let down. I've had enough now and am really gearing myself up for a clash when I see him next. It's almost like if they don't know something they talk to you as if you're thick in an effort to hide their own lack of knowledge.

6 Replies
oldestnewest

I was lucky with my GP as she has the notes from neurologist stating it was FND. Although she admitted to not knowing enough about it she actually went on the websites I have her and researched it herself and she's been so helpful and supportive. Maybe you should politely give him the neurosymptoms.org site and Fndhope sites and suggest he educates himself so he can better support you otherwise I'd take the not so polite approach till him he's an arrogant twat and see another GP!! Hope you get the support you need x

no ive gave up with all gps aty surgery they have no ideaind you it took em 4 years to diagnosee then still gave me the wrong Meds and advice or help still looked at me as if i was nuts tbats been nearly a year now lol

Im sorry your having trouble with The Gp, But Yes they need to educate themselves better when it comes to Fnd and going on our website fndhope.org would be good so he/she can read up about it. We are trying to get more Gps to get involved with learning about this condition and slowly some are, which is great, on our website we have information you can print off and show him if you want to do that, or if you send me your email address in a Pm and you have a printer, i will send you our leaflet you can print off and give to him... Good luck dont give up, Always have HOPE!!! XX

Louyse
LouyseModerator

Loads of times. Tell the GP that FND is based on POSITIVE DIAGNOSTIC SYMPTOMS and not just some bucket diagnosis when tests come back normal. Point out that Dr Jon Stone at the Western General Hosptial in Edinburgh is one of the few UK/European Specialists and has set up his own website to educate people : neurosymptoms.org. Also point out the Dr Stone and the other UK/European Specialist Prof Edwards in London (can’t recall hospital of the top of my head) also contribute to FND Hope UK webinars. Also Dr Stone did a spot at The Edinburgh Fringe on FND. It is on YouTube. But really emphasis the positive diagnostic point. That tends to make them sit up and take note. There has also been a new Neurological book published into research being conducted all over the world and last year the International Conference was held in Edinburgh with over 550 delegates from around the world. Sorry you’ve had to join the FND Army but we have to keep fighting each ignorant barricade.

Cheers

Lou

Louyse
LouyseModerator

Oh forgot to say that when did it recently because I moved house and thus to a new GP practice the GPS wanted my Hubble and I to come in a speak to them. I gave Hubble some notes and he saw my GP and then they used my notes as the basis of their training day devoted to FND.

They are a joke fnd stands for ferk knows diagnoses IV seen 2 so called specialists 2 mental health teams 6 doctors who had to Google it because they had never heard of it the medical teams seem to pass every one over to the mental health team I have a broken neck broken spine have sufferd two strokes I'm machine fed and I'm bed bound 24 7 one of the lucky ones with injuries if you have no injuries it's simple they put you down as a nutcase with mental health problems so sorry people you have no chance until all doctors are retrained IV been told of 2 different doctors in their opinion it's mental health problems wot chance do fnd sufferers have when behind closed doors the doctors are calling us all nut jobs non

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