Dystonia

[Biglumpycustard]

I have been diagnosed with dystonia in my foot. I struggle with my foot because it want to move all by itself. I was just wondering if anyone else suffers from dystonia and how it affects you.

Hi I have a dystonic tremor in my legs it's not nice I hope you have a good Dr helping you. Dystonia UK run local Facebook groups which you might find useful

@LukeDogWalker I wouldn’t say she’s perfect. I’m been put on medication and waiting to see a specialist hopefully going to have Botox. Do you find the medication help.

Yes but in my jaw. It is now much milder than it used to be.
Make sure to get plenty of sleep and don't overlook the power of 'touch'/ sensory tricks (geste antagoniste). In my case chewing gum works.
I was offered botox but declined as I was able to manage with the gum.
www.dystonia.org.uk/

It’s difficult to sensory trick as it’s in my left foot. I wouldn’t know where to touch for it to make a difference. Are you on any medication for your dystonia. With me I want the Botox I wants some hope that I will be able to walk better.

No medication. Try touching your foot to see if you can find any areas that respond.

Mine has got milder over the years.

@weirddysto I started having symptoms end of 2019, because of covid my appointments have been a long wait. To me my foot as got worst in 2 years, it pulls more down, toes don’t lift up when I walk and my foot turn in. I do wear a splint but it useless really, just stops me from falling but my foot still pulls down. It’s just a nightmare.

Sorry to hear that . It is very rare and when it happened to me I was surprised how few threads there were on Mumsnet, hence why I had to respond to you.
The medications and treatments will likely help. Given the covid delays to the NHS, could your neurologist authorise some medication in advance in liaison with your GP?

@weirddysto Yes my neurologist has given me medication from last month, when a doctor would see me back in December last year he didn’t know what was wrong with my foot. So I haven’t had anything just a splint. As you said I have never seen a thread about dystonia. I just wanted to find people that sort of know what I’m going through.