Can anyone recommend a private specialist in the UK in this field?

[Dot50]

Hi,

I was told I have functional gait disorder, having problems with my left foot. I have lost the normal walking pattern on that side. Neurologist says no treatment, just physio for support, but hascdeteriorated these last few years where I have to use crutches. As a resultvi had to retire and now finding my life is quite limited. Waiting to be referred to Dr Mark Edwards at St Georges Tooting as I live in Wales . He no longer takes private patients, and if im referred I know I'll have a long wait. I've searched the net but can't find anyone who specialises in functional gait disorders. I'll be grateful for any recommendations.

Sorry for the typos but I can't go back to correct it!

[lorettapalmer]

Hiya, I have functional Gait disorder also, and have been suffering for 5 long hard years. When I was first diagnosed my nhs neurologist just told me that you have functional gait disorder, it's in your head and then left me to get on with trying to work out why I had no feeling in my legs! I went to different private neurologist trying to get help but none could offer me any. I now have worked out that you need different help for the problems the condition gives u, i.e bladder problems urologist, nerve problems: neurologist, leg swelling: Phiso etc. My only other piece of advice if you could find one is a neurophiso as they specialist in walking problems like ours. I really hope you get the help your looking for and this helps,

Kind regards, Loretta x

[Dot50 in reply to lorettapalmer]

Thanks Loretta for taking the time to reply. Much appreciated!

I feel I need to retrain my brain to walk normally again, to recover the normal effortless sensation of walking. When I take a step, my foot, ankle and leg stiffen, so I have no control over the movement. It's like I think my foot can't take my weight, so I hold back and limp, letting my good right leg take do the work.

Like you, I've been to private neurologists who gave me the diagnosis, prescribed powerful medications (which had no effect) then was followed up by my nhs neuro who said try physio and see me again in 2 years! The strange thing was that the problem first started in my right foot, then after about 6 years, affected my left - making me feel it must be psychological. It is a minefield trying to find a psychotherapist with experience in this, and the nhs seems a non starter.

My hope is to be referred to Dr Mark Edwards in London, but I seem to have spent half my life pinning hopes on the next appointment.

I add that my walking pattern puts a lot of strain on the wrong muscles so making them very sore, also the effort of shifting weight from one foot to the other, makes me feel exhausted.

I did try a neurophysio once, but wasn't impressed with her, and there aren't many around.

Thanks for the opportunity to put this into words! I know there are no easy answers to all of this, and I resent the time I spend thinking about it all the time.

I think the main thing all these posts from so many affected people highlight, is that there is so little expertise in this area. Im not sure how that is going to change. Perhaps we should have a mass rally to make clinicians notice us!

Take care, I hope you have a good day.

Dot

[Lucy-15 in reply to Dot50]

Hi there....yes we seem to have been struggling with Similar symptons...my left foot drop gradually lifted again after 6 months...but I found a great sports therapist who I found more hands on then physios...with deep massage like techniques to help the scar tissue that built up,when I was using specific leg muscles for a while due to my limp....also helped my plantar fascitius ( can't spell it) tightness and awful pain/cramp in arches of both feet by rolling arches on a small spikey yoga ball every day...again caused by my limping for so long ...when not hope this helps a bit. Dot....