Some weeks ago I wrote to mention that my right foot was turning inwards and if anybody else was having or had the same problem.
I had my appointment by phone on Friday with the Ataxia team in London, the doctor was very interested in what was happing to my lower limps and asked If I could send a video of me walking, after viewing the video he then mentioned it is almost defiantly a condition called dystonia but I need to get that confirmed by a specialist sometime in the New Year.
I just wondered has anybody had this condition as I’ve never heard of it myself even though I've done a first aid course, of course I've been on Dr Google to find out what other joys I could be in for now.
Hi Paul 🙂 Although I don’t have this myself (as yet), it seems to be fairly common, I’ve seen several posts (on other groups). Some people recommend Botox injections.
Hi Paul, most people have not heard of this. I have dystonia, in my neck, back and my left foot. My left foot turns in also. It is a neurological disorder, sometimes genetic or other disorders can cause it. Botox injections can help this. Wishing you all the best.Suzie
I run the South London ataxia support group, which now meets online. Recently (in early December) we had Hector, one of the doctors from the London Specialist Ataxia Centre, give us a presentation. In it he talked about the different, possible symptoms of ataxia (both the common and the uncommon ones). He mentioned dystonia and you can view the first part of his presentation at this link: youtube.com/watch?v=XogFsj1... He talks about dystonia , both the symptoms and the treatment from about 17.20 minutes into the presentation until about 20.00 minutes.
You can find this video of his presentation on the Ataxia UK site.
We all took a break in the middle of the session, and there are two parts of his presentation. In the second part, he mostly responds to questions that he had. Part 2 can be found at the following link: youtube.com/watch?v=OlqqBKw...
I'm new here and yes I have dystonia, turning my ankle inward about once a month, sometimes while in bed, walking or just sitting. Can be painful and affect my leg from thigh to foot. Ouch! Take care....
My husband was diagnosed with dystonia of his legs. One of his knees wouldn't straighten and he would get pains in his legs and could hardly walk for pain (in fact he was in a wheelchair for a period of time). He was told that his dystonia would never get better but the health professionals were wrong ...................... For not giving up we looked for treatment and managed to get botox in his legs. This gives you a break from the pain (as it kills off the nerves before they grow back) and you are able to stretch (as we read that the muscles have a memory and return back to the previous position unless stretched gradually).
Over many months the legs started to be straighter and more mobile. Another tip I can offer is, when you sit in the evening, get a pouffee and stretch your legs out whilst watching tv. Gravity gently stretched the muches each evening (I don't know if it would work with your foot).
Finally, with dystonia, my husband noticed muscles spasms and tightness. I bought a trigger roller from Fit66 (it looks like two blue spikey balls on a roller!). He used the roller to break down the microknots in his muscles.
Oh, and he missed his cycling so we bought an electric bike to allow exercise but not to over stress the leg.
Moving forward to today - my hubby can straighten his legs, he can walk further and faster than me and is off all his medication (tramadol, gabapentin, diazepam ect). He still stretches his legs on the pouffee each night and uses the trigger roller.
My main message to you is don't give up as my husband wanted to and became depressed.... a totally different person now.
Wow that’s fantastic and very helpful I will defiantly try what you have advised.
It was only last Friday that I was at the dystonia centre, I also have dystonia in my legs and right foot and the same systems as your husband, he injected Botox in my right leg which is the worst of the two and my right foot he mentioned it would take about two weeks to kick in so not feeling any benefits yet but hopefully will soon.
It’s so good to hear he’s so much better so all credit to you both as it’s so easy to give up and so hard to keep doing what you need to do.
Sometimes you need to dig deep to find your inner strength.
I really appreciate your help and advice so many thanks.
Tell your husband to keep walking and stay smiling.
You will get there x - watch out for triggers such as stress/depression.
I will see if I can find the video's I took when my husband was initially trying to walk (after the botox) and a video taken a few years later. If I find them, I'll pop them on youtube and give you the link.
The secret is to gently keep stretching the legs/feet bit by bit eg whilst in the bath/feet up on a pouffee to allow gravity to help you along. Oh, another thing I bought for my hubby was a FIR wrap at the beginning........ I found one that works off rechargeable batteries. The FIR wraps are infraheat which goes to a depth of 2 inches..... this keeps the muscles warm. If you can't find them, wear as much warmth around the area e.g. long johns/thick socks. Bit by bit the muscles start relaxing to a previous stretch and it gets easier for movement (initially, under general anaesthetic, they could straighten his leg as it was a fixed flexion of the knee. He was told that it would never straighten and, eventhough it took a couple of years, he proved them wrong).
Hopefully this will give you the encouragement that actually there is a way out of chronic pain but it's one little step at a time (excuse the pun x).
Found it .... I put it on youtube a couple of years ago to show the physio the improvement.
The first video is back in 2012 (after he managed to get out of a wheelchair and every day, attempted to walk to a park gate and back). You will notice him dragging his left foot along (I also told him to try and point his feet forwards).
Moving forward to 2018 all his hard work is shown. The other thing he did was loose weight to get the weight off the joints/muscles.
hopefully you can copy and paste the link below to view.
That’s absolute fantastic he’s a different person it’s a remarkable achievement and well deserved for the push and determination you both had to achieve so much.
It must be a great feeling to be always told that there’s no cure and walking will be difficult or nonexistence and then achieve that.
It’s give me a big push that I need as I’ve been getting a bit slack lately and becoming an ornament which to be honest is not really me being a dust collector.
I’m really grateful that you took the time to write.
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...................... For not giving up we looked for treatment and managed to get botox in his legs. This gives you a break from the pain (as it kills off the nerves before they grow back) and you are able to stretch (as we read that the muscles have a memory and return back to the previous position unless stretched gradually). 
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Experience of neurology during the coronavirus crisis. Asking for your help!
