West Yorkshire - My Daughter has recently been diagnosed with FND and we now feel isolated, any useful contacts in West Yorkshire?

[WorriedPappa]

We need some help and guidance, surely the diagnosis is only the start of the journey...

[Bluecat99]

Hi,

there are a number of patient support groups that may be able to help. If you search for FND support, you may find FND hope UK, FND action and FND dimensions. There is also FND Friends, but they are Southwest based. FND dimensions run support groups across the country, and may be a good first call. There are also a number of Facebook groups, including one for young people who've been diagnosed. These are also run by one of the support groups (I'm afraid I can't remember which one).

I hope this helps.

[WorriedPappa in reply to Bluecat99]

Thanks, I will look at those. Our most immediate concern is that since Friday she is finding it very difficult to walk. Best way to describe it is that she walks as though she has MS or Parkinsons. We took her to hospital but they sent her home. We are now 'waiting for a neurologist. This is very scary, but reading some comments on here it doesn't seem that uncommon. I really hope she is one of the lucky ones who regains the ability to walk soon. This FND seems to present itself in so many different ways for her.

[Bluecat99 in reply to WorriedPappa]

Hang on in there. The most important thing is for her to know that you support her, as the medical can be rather unhelpful with FND.

You can request a physio appointment through your go without having seen a neurologist, and they can help recover your daughter's mobility. There are physios with specific experience in FND, although they are unsurprisingly very busy.

In my experience, perseverance is key. Set small goals and work towards them. I had a tremor in my arms, legs and head, but it stopped completely whilst I played the piano. It was very weird but gave me an activity that I could do which provided respite from the tremor. By paying the piano a lot, I now don't tremor at all, and am able to do many of the things that became very difficult for a while.

Everyone's experience is different, but if I can help, just say.

[Muckmuck in reply to WorriedPappa]

Hi ,I have to have a Routine . I can walk well without meds and I also have the movement disorder so yes you're right about it looks like Me and or Parkinson . I started with lorazepam . It really helped with walking and tremors

[senis2oo4]

Hi dear l have FND since 2017 and l am still feeling alone xx💐

[Andrwhll]

Hi, the diagnosis is just the start but that doesn't necessarily mean it will be always negative. I have FND and have for the best part of 4 years, in the early days it was difficult because the symptoms where coming thick and fast, functional weakness, seizures, concentration, hearing etc. It was very diffucult to get the help as generally people didn't believe that my symptoms were real, after just over 2 years I got to see the FND specialist who basically confirmed the diagnosis and believed it was trauma related as there wasn't anything physically wrong with me although the symptoms were physical (confusing).

I was in a wheelchair, then progressed to a walking frame and now I walk around unaided, my seizures have gone from 8 or 9 a day down to 2 a day but they're different now and not as intense

I think once you have come to terms with FND and accepted all its flaws then I believe you can start to improve things.

I had OT, physio, massage, CBT and therapy, initially I had daily painkillers causing other health issues(kidneys, stomach ulcers) but now only if its unbearable.

There can be light at the end of the tunnel and this doesn't have to rule your life.

If you every need a chat please feel free to let me know.

Good luck

Andy

This is just my journey and I know FND is different for everybody.

[WorriedPappa in reply to Andrwhll]

Many thanks for your response and its always encouraging to see stories like this. We are going to pay for private neurophysio with someone that understands FND whilst we are in the merry-go-round of the NHS and getting passed from one department to another. Hopefully this will help and I agree that one of the key things is for her to remain positive. Unfortunately this loss of the use of her legs has really set her back, we are trying to look at the positives with her but its very difficult. I can only imagine what she must be going through.

[Andrwhll]

Can I ask, did anything trigger the FND? Accident or an illness?

I had a lot of dealing with Dr Paul Jarman in London he was very understanding and also a doctor in Cambridge but I never remember her name.

Professor Markus Reuber

Department of Neurology

Royal Hallamshire Hospital

Glossop Road

Sheffield

SW10 2JF

Tel: [phone]

Email: judith.o’[e-mail]

This one might be worth a shot as it's not too far from you.

[WorriedPappa in reply to Andrwhll]

We are not sure, she suffers from severe anxiety and non epileptic seizures. Her hand sometimes gets stuck in a claw shape and she has verbal tic. She also sometimes goes non verbal after a seizure. This issue with her legs is after some seizures and these have become more regular as A level assessments have come up.

[Andrwhll]

It must be difficult for you all, you are doing amazing supporting your daughter. All I would say is explore every avenue and keep an open mind as you never know what might help, like on a previous comment for one person a playing a piano can help but someone else it could be herbal tablets it really is a case of trying everything that might have potential to work.

I'm currently trying something called Trauma resolution and I'm all honesty it's helping exercise those demons as my apparantly is trauma based so worth a try.