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FND & the physio that actually works ?

filifou

Hi everyone I was diagnosed with FND 8 months ago after 2 years of limbo.

At first I thought it was a relief and the promise of access to services like community Neuro and neurophysio seemed great.

But 4 months of back and forth I realised there is never a physio involved all we did was talk. I feel I gave them a lot more valuable and private information for nothing.

I still have the physical symptoms of weakness, tremors, foot drop and more.

Does anyone have a similar experience or found a service that can actually help recover or reverse
rather than show you how to manage symptoms?

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Comments

Hannah_Alumni

Hello @filifou

I am so sorry you feel your sessions are not going anywhere. Have you thought about asking your GP / specialist to be referred to someone else?

Danlangridge88

The same happened to me. I saw neurologist and had a seizure during the EEG exam and still showed nothing and got diagnosed with FND. I got discharged and received no treatment- no medication, no therapy. I did have physio but not until years later when I started developing pain and stiffness in my muscles and joints (which went unexplained - not arthritis, although I'm on a waiting list to see a specialist about that, I also suffer from chronic fatigue.
The thing is this could be or be unrelated to the FND, therr just doesn't seem to be much information/ Treatment for this disorder.

If you feel you need physio, just request to see one from your GP. It might be beneficial even if it is your MND, I'm not sure if there is a specialist MND physiotherapy. There is neurophyscotherapy available I believe, but I've never even been offered it. The neuro department just discharged me saying it was a mental disorder and left them to deal with me... Well I say that, more like got discharged from one plabe to another team who isn't taking my condition serious enough, who then also dischages me back to GP.

Moral of the story.. there are some options, although maybe not exactly what you need. But because these options aren't familiar with FND they just seem to want to discharge you to someone else who also has no idea.

Maybe your NHS area is better than mine, in South London it's dreadful.
Hoping you get some kind of help you need. You deserve to be treated as a patient with a disorder rather than a patient in which nobody understands and wants to deal with.

I participed in a study for FND where I recieved rTMS - Some kind of magnetic stimulation. But I only had 2 sessions so it wasn't enough to see if it was effective. I did some research and found something similar - tDCS which you can do at home. It's expensive, £400, for a headset which lasts a lifetime. I've been doing it for a few months now and it drastically improved my mood and reduced my seizures. I know it's pricey but a great investment. If you don't know about these procedures, do some research. Here is a link to the headset too https://www.flowneuroscience.com/shop/?utm_source=google&utm_medium=cpc&utm_campaign=20519709980&utm_content=154194790938&utm_term=rtms&utm_id=CjwKCAiAkp6tBhB5EiwANTCx1BkjPnElfARsfGy9UFcVWoSY9BYB0cxfi24yoIDYZ9H5qEmwxQFYWhoCXnQQAvD_BwE&gclid=CjwKCAiAkp6tBhB5EiwANTCx1BkjPnElfARsfGy9UFcVWoSY9BYB0cxfi24yoIDYZ9H5qEmwxQFYWhoCXnQQAvD_BwE

It really works!!
I hope I have helped you, sorry for the long post!
All the best
Dan