How do you get referred to the best FND specialist in the country If you are out of the area? I am willing to travel!

[Fia1]

I was diagnosed with FND March this year but my neurologist has retired and not really set a proper plan in action I trust in. I feel abadoned and believe that my symptoms of FND are down to being on the previous ms drug tysabri as convinient my pain only started when I was forced to stop the treatment 3 years ago so nobody wants to take responsibility or help fast it seems 😡

[Dot50]

Hi, do you live in the UK? I live in Wales and asked my GP to refer me to Prof Mark Edwards in London, when I read about him on the internet. He is based at St George's hospital, London and is one of the main experts in FND . My surgery had to ask the local health board if they would provide funding, and eventually they agreed. I am now on a w/l for intensive physio treatment, but still need to check if I can have funding . Good luck!

Dot

[malalatete]

I too gave my GP Prof Edwards' details and asked for a referral. Took a long time to see him mind you, and I am talking about 6 years ago when he was still relatively unknown.

[Cookiecc67]

My neurologist told my GP to refer to Prof Edwards. It took 10 months and then a further 8 months for physio but it was worth it.

[bobbybobb in reply to Cookiecc67]

I was diagnosed last week. Im seeing my GP next week. Can I just ask him to refer me to Prof. Edwards. will he react ok to that do you think.

[Cookiecc67 in reply to bobbybobb]

Yes you can ask for this. I don’t know what your GP’s reaction will be. Mine was fine. You can ask them to look at FNDHope if they are unsure.

[bobbybobb in reply to Cookiecc67]

Thanks I am going to definitely ask him when I see him . Can I ask how long physio takes as am about 4 hours from London, Im wondering how it all works if Im lucky enough to get a referral.

[Cookiecc67 in reply to bobbybobb]

Hi it took about 10 months to see the Prof and 10 months to get in patient physio. Where are you as there are some other neuros who are good.

[bobbybobb in reply to Cookiecc67]

Im on Merseyside .

[Cookiecc67 in reply to bobbybobb]

I do not know the name of anyone in Liverpool but I am aware that the Royal Liverpool have neuros who take FND seriously and there is a Dr Marcus Reuber in Sheffield who is good.

[Jessdonna in reply to Cookiecc67]

Hi i am in sheffield and just diagnosed with fnd. Have you seen Dr marcus reuber. Can i request to see him by just asking my gp to refer me?

[Cookiecc67 in reply to Jessdonna]

You should be able to

[EnglishIslander FND Hope Volunteer]

If you live in England you can ask for a referral to anyone in the country. It's slightly more difficult in Scotland, Wales and Northern Ireland as funding seems to be an issue but the London specialists will see you if you can get your local group to fund it.

[Eunomi in reply to EnglishIslander]

It appears there is a post code lottery. Depending where your GP. Is located.live In Derbyshire. Requested to see a consultant in Sheffield, advised due to geographical constraints can only see this consultant in Chesterfield. Given an appointment In January.at Calow hospital.