Functional Neurological Disorder - FND Hope
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Neurologist in London - recommendations?

Hello there,

I am getting quite frustrated by having to wait months for my next NHS appointment and very desperate and I have decided to go private but I'm not sure who to go with. I am not yet diagnosed but have seen a neurologist who basically described FND as most likely cause of my symptoms, however he only recommended mindfulness and exercise at this point which I have tried and haven't noticed any difference in my symptoms. I wondered if you have any recommendations?

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Hi I'm under prof Mark Edwards a neurologist based both at Queens square consulting rooms. Queens sq. London. He works privately from there and suggested a 5 days intensive out patient Neuro physiotherapy that I had last Feb which has given me techniques to help my walking problems with my left leg weakness caused by FND. I'm lucky I'm covered with my job

He is also based at st George's hospital in Tooting where he set up a new FND clinic recently under the NHS

Hope this helps. If you need anymore info let me know.

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Hi Lucy,

thanks for your response! I did contact Queen Square consulting rooms but was told he no longer sees patients there and has not held consultations there in 6 months! I have also been in touch with St George so will see what they say...

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Hi ...umm strange maybe he is focusing more on the st George's new clinic. I can ask my Neuro Physio for you who works with him to clarify. Let you know ASAP ok. Do you have difficulting walking too or other symptons may I ask ? No worries if you'd rather not say. take care.

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That would be very helpful, thanks. Luckily I don't have any mobility issues at the moment. My main symptoms that I'm trying to get help with urgently are tremor and muscle jerks.

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Hi Lucy

Can you explain what was the 5 days treatment based on, as I am finding difficulties to find information that can help me, I have the same problem as you and live in Denmark couldn't find the proper help...

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Hi Sasso ...I went to Copenhagen and would love to see more of your beautiful country one day ....of course I can try to explain......so even tho my left foot drop ( could now lift my left toes a bit) was bit better I still limped and my left leg had muscle spasms and It felt weak n hurt...as I lost control of it after about 5 mins walk ! Used my walking stick all the time and any slope n stairs were sooo tricky !

After18 Mths I had the 5 days with the lovely Neuro Physio Glenn Nielsen ( Google him based at UCL London really understands FND

So here goes....

Day 1 -looked at my aims. Measured steps per 10 Metres walk. I did 18 steps per 11 seconds at start and 14 steps in 7 seconds at discharge 5 days later !

Learnt sit to stand to sit ..how to be more stable ...

BEST BIT - before starting to walk - gently sway from side to side then put weight on front of feet then ...gradually move forward...wide stance...felt more stable....swing arms more......I now use this if my limp comes back as the idea is to STOP as soon your 'old' way of walking comes back and use this sway to RESET...then off you go again .....I use it in the street I don't care who is watching :) ...

Let me know if you struggle with stairs or walking up slopes too? Then I'll message you some more as I don't want to over load you here ....

May I ask how long you've struggled with your walking? And how it started? if you don't mind I'd be interested to know hope this helps a bit. take care Lucy

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Hi Lucy, thank you soo much for the information :)

It started around six months ago. And it was getting worse by time. It started with numbness in the toes even before the six months.

It will be great if you can me send me more details about your program as You know few doctors know about FND and I am trying to help my physiotherapist and my doctor to find more informaton so they can help me better.

All the best for both of us.

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Would love more info on physio have problems walking unaided I have cervical dystonia and see Prof Bhatia at Queen Sq but live in windsor thanks Lisa

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Hi,

Glenn N did much the same with me. I use the weight shifting to centre myself if I get wobbly. IT WORKS!

I still fall over from time to time. Am on first name terms with local A&E! But I am mobile again. Not long walks, just around the house and a few excursions, so far. It is early days.

As an aside, my insulin intake has dropped radically (from 20 units twice a day to 6 morniing and evening). That's a side effect that I didn't expect! My, er, bowels are regular (after 14 months of chronic constipation - since the neurological event which triggered the FND - a chemical clash following surgery - but that's another story!)

What Glenn did was to move my autonomic system from flight or fight and into rest and digest. Sounds so easy, doesn't it?

But it definitely works. No tricks or mirrors. Nothing but retraining the brain/mind to think differently.

Simples!

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Ps - I forgot he also videoed my walking then walking up and down stairs and sitting to stand to sitting ! It's a great idea I found I was shocked how different it looked to what I thought in my head !! Then videos me at the end again ..

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Luckily so far its only walking problems a little numbness in my arm, but no problem with going up the stairs. I have almost of your symptoms foot droping, muscle spasm and only being able to walk few steps then I really get so tired

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Oh dear sorry to hear that. Let you know ok. He really is very caring, professional and knowledgeable just shame there are so few specialists in this area.

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Hey Lucy, any news on this? I emailed St George's but no one got back to me :(

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Hi there. Oh dear...just heard back and Prof Mark Edwards has now stopped seeing patients privately as he is now focused on the new NHS clinic he has set up at St Georges hospital in tooting.

Hope you hear back soon. Take care

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Thanks! I guess I will have to find someone else for now...

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Thanks! I guess I will have to find someone else for now...

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Lucy, I'm glad to hear this as I have just been referred to him, by my consultant, for possible FND diagnosis. Luckily for me he works at the hospital of my choice for my second opinion, after my first neurologist practically dismissed me before I walked in the door. Oh, and I'm a health professional too, unfortunately it didn't garner me any more respect from the first one.

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Mark Edwards at NHNN, esp for tremor, as movement disorders is his speciality. It does take a while to get to see him because he is one of the best in the field. I too did his inpatient clinic for walking difficulties and found it helpful with a slight improvement in my walking rate and some good coping strategies too (although my spasticity in the end has come and gone on its own in a marked fashion and so my consultant is now exploring other diagnoses...)

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Hi I had symptoms of Parkinson's in 2012.it was in the family,but told I didn't have it.like you fed up with waiting so booked privatley to see neurologists whom also worked at kings college London.i didn't have Parkinson's so what was this condition..? He didn't know..I am now under proffesser mark Edwards who diagnosed fnd in 2014.if I were you I would book to see him privately,get your diagnois and then ask to be referred back to the nhs.i wish you well..debs x

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Hi

My husband has quite severe FND and we went to see Dr. Mellers who is at Maudsley Hospital. we just went to GP and asked for a referral and then waited a few weeks. Checked with the GP that it had been sent and received then i rang the Reception at Dr. Mellers office and gave them my home phone and i was told it was about a year wait BUT they had hired a registrar who works with him to help reduce waiting time but we were put on the list in case of cancellation and a few weeks later got a call on a Thurs asking if we could be there the following Tuesday! So its worth trying and if nothing else there is hope because although our neurologist was helpful he said there wasn't much to do but there is a great deal they can do to help and we had a two hour appointment and will have follow up appointments. They said they were confident that they could get him back to normal life which is the most hope we've had in nearly a year! Once you've got your GP to refer you then ring their office to follow up. Their info to give GP:

Maudsley Hospital

Denmark Hill

London

SE5 8AZ

02032282330

All the best!

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Well to be honest I am not a major fan of the medical profession on this issue, as I think many would share that opinion. We have not been treated well, and that causes us to be quite weary of them. Afraid to say the wrong thing, or do the wrong thing, it is truly a shame. Are you in the states? if so we could talk on the phone. I could give you my number, I live in WI and I have been blessed that after several years of this I have had very good medical care, however even in this I have had times when something did not fall into their neat little synopsis that things can get a little rough. I have had this 18 years now. I have learned less to them is more. I have never actually been labeled fnd but dystonia a movement disorder. However, I have most of what every one else on this board has, and I believe most of the people on here have a yet unidentified movement disorder that would be labeled under a new dystonia, which I think would be better for all considered as they might get the help they actually need. Anyway, I pray you benefit from some drug therapy, I sure have and am blessed in that. I am currently battling hemifacial spasm and is quite trying, but I am blessed I can still move and breath, and am able to praise my God in the midst of a pulling mouth, hard to eat, and eyes clamping shut, its a ride for sure, but God is good. If your in the states and would like to call just let me know. God Bless, Cathy

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Hi, I took the private route to speed things up for diagnosis. It was a total waste of money. Yes, I was seen more quickly but not quickly enough to justify over £1000 for consultation and tests to tell me it was FND and I should get psychological support to help come to terms with it as well as physiotherapy and pain medication. I couldn't find a decent specialist in FND working privately but have since seen one on NHS. Well worth the wait!

I find Mindfulness really helpful, especially when I am dispairing about the future or having a really bad day. I have gone on 2 NHS funded mindfulness courses to learn how to apply it properly.

From my experience, I find exercise is essential but it needs to help stretch tight muscles as well as keep them from wasting. I can only take short walks but that helps keep me going too. I had a few sessions from NHS physio that helped but couldnt get more. After a lot of budget planning, I now see a sports physio once a fortnight and have a deep muscle massage in between times. I wish I had done this earlier instead of wasting money paying for my initial diagnosis.

I dont know if you experience much pain but good pain relief is so important if you want to get moving. I also use heated wheat bags and warming/ cooling gels on sore muscles and joints.

I have been thinking of accupuncture for a specific area in my back but the best accupuncture is from those fully trained in chinese accupuncture.

I also take B complex vitamins and multi vitamins with magnesium.

There doesn't seem to be much else on offer either via NHS or privately, that I am aware of but I have found that a combination of all of these things helps.

Take care xx

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You could fly to Italy from the UK and have a full consultation with a renown English speaking neurologist for a fraction of the price. Milan or Pavia have famous neurological centres.

Waiting times are minimal for private patients.

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