advice please

[Judiy]

hi, new to this group. Had a walking problem since 2018, wobbly, balance bad, felt uneven, stairs worse- legs go weak! Left foot turns out. Can set off ok ish then seconds later I’m shuffling. Not in pain. Going round in circles for last 4 years ( neurologists not giving diagnosis) seen one this past month who says he thinks it’s dystonia, so has put me on levodopa/carbidopa which I’ve taken for three weeks with no improvement in me at all . Just wondered if there’s anyone else with leg dystonia who has tried any other medication that has been more successful! I may add, I walk backwards far better which doc said is also sign of dystonia?

[Sugartime]

Hey Judy our 29year old daughter has been diagnosed with FND for 3 years early on she had a walking gate and swung her leg we visited a Nero physiotherapist and with her expertise and determination our daughter does not have that issue anymore .She does suffer from extreme fatigue with exercise she needs plenty of rest. My advice is seek out the professionals and take it one day at a time

[Judiy in reply to Sugartime]

thank you so much for reply, never knew they had neurophysio , will definitely ask doc !

[Lucy-15]

Hi sorry to hear you are having such a tough time.

I’ve had gait/mobility issues for about 7 years now. Was diagnosed in 2016 with FND. I’m much improved now, with odd relapses of course ! But am using my stick just occasionally now, but still a wheelchair to fly or for long days out etc , so thought I’d try to reply

Not sure if you are in the U.K? but if so maybe check out the FNDhope.org website, if you’ve not seen this really helpful website already, it lists the FND specialist centres around the U.K.

Your GP / some neurologists can refer you and if they won’t, well I’d say just get another GP as their opinion on this, varies so much I’ve heard.

Sadly, we have to fight fight fight for our right to be seen by specialists, where appropriate I feel, it’s such a long journey eh

They will use tests such as, the ‘hoover test’ for example, to see whether it is FND. Or maybe a combination of things.

Then they have FND Neuro physio’s who really understand this disorder and how to treat it. So very different I found from a usually physio.

Today I still use all the techniques I learnt, that helped me sooo much, it’s not a fix, but how to manage these mobility issues and live as full a live as possible.. ( sorry I’m waffling now)

I’ve fortunately had 2 x 1 weeks one to one with a FND Neuro physio and learnt really helpful techniques to help me manage steps, help with my left leg limp, drop foot, how to get started after sitting! and many things similar to some you’ve mentioned here.

I can’t comment on medication, I’ve tried many over the years! like I’m sure many of us on here have to, but I was advised to try the one you mentioned, for several months to see if any change, not just a few weeks.

Hope this helps. Wishing you well. One step at a time eh

Take care. Lucy in Brighton.

[Judiy in reply to Lucy-15]

thank you , yes am in Uk. Your advice very helpful xxxxxxx

[GardenPlant]

I have had Functional Gait Disorder now for 4 years - was difficult to diagnose - have not taken any medication but have had lots of physiotherapy which have helped. You may want to check on the walking backwards as a type of dystonia - I also walk well backwards perhaps even better than forwards- I do however get buckling in my knees sometimes. I beleive the key is physiotherapy and not medication.

[Judiy in reply to GardenPlant]

that’s interesting! I will definitely pursue the physiotherapy, thank you so much !