Edinburgh and London

[Legbrace74]

Seen my neurologist today and he is talking about me trying new treatments for FND in Edinburgh or London don't know what treatments yet I will let you know when I get more info any one any ideas what they could be

[malalatete]

Probably the intensive neurophysio clinics. Some inpatient treatment involves CBT and other psychotherapy as well.

[Seanb]

They have put me on Cymbalta and Amytriptline. Haven’t started it yet. Imagine I will be on these for life once I start. Not ideal.

[RobertWT]

After 14 months of stumbling, shuffling, falling (A&E, hospitalisation etc) and ZERO help from neurologists in Ireland (refusal to treat, absence of diagnosis, end of 12 month waiting list because I ws an urgent case! etc) , I travelled to the UK and had a week of intensive physio at St George's in Tooting, London (Jan 29th to Feb 2nd). The effect has been amazing. I can walk unaided (still only short distances, but WALKING!)

This was at Professor Mark Edwards' clinic and with a very talented and sympathetic senior physio called Glenn Nielson.

Can't praise their expertise and compassion highly enough.

[Dot50 in reply to RobertWT]

Hi Robert, that is fantastic news after the tough experiences you've had to go through. How long did you have to wait for your appointment at St George's? I saw Professor Edwards (privilege to meet such a renowned expert in the field) last September and was told the waiting list was 12-18 months for the treatment you have had.

I can't wait to go, I've heard so many positive outcomes from this. I've had problems with my walking for 15 years now, which have worsened over time and had such an impact on my life. Thank you for posting your good news and I hope you continue your progress. Good luck. Dot

[Legbrace74 in reply to RobertWT]

Hope they can help me had no feeling in my right side from my ribs down for five years

[RobertWT in reply to Legbrace74]

Hi Dot,

If anyone can, Prof Edwards and Glenn can.

There's a quotation from the Scottish play (yes I know it's considered bad luck to quote from Macbeth) but it's "Screw your courage to the sticking post."! or something like that.

That is the answer. Be courageous. WIN. NEVER GIVE UP!

NEVER!

Robert WT

[RobertWT]

Hi Legbrace74

The answer to you is the same as the one I made to Dot.

Do not just HOPE that they can do something. Be very positive. They CAN do something.

Have courage.

HAVE COURAGE.

KEEP GOING.

Do not give up.

If you must, do it through gritted teeth. "This is me they are talking about. I shall show them what I am made of. I CAN AND I WILL."

Best regards

Robert WT

[EnglishIslander FND Hope Volunteer]

I can certainly recommend all the Inpatient programs, either in Edinburgh, 3 in London, 1in Bristol and 1 in Sheffield. Many of us have attended these (I did the Lishman and about to go to the Wolfson). The can be a huge help.