dystonia

Dystonia…again

/ RachelMorrisMcGeethemyastheniakid / Leave a comment

Around 10 months ago I wrote about Dystonia, I had been having terrible muscle spasms in my feet . You can find the original post  https://wp.me/s4zBAs-dystonia . I said at the time I was waiting for the Covid situation to die down before I would speak to my doctor about it. I have had so much contact with my doctors surgery over the last 12 months it is getting embarrassing. I have had so many health issues that have all needed in put that when my feet really badly flared up for days on end, leaving me unable to walk until the spasms stopped. I knew that I could no longer ignore the issue. When your toes are curling under and making it impossible to walk it has got to the point where you can no longer ignore the situation.

Until last week my feet were intermittently causing me issues. I knew they would be bad if I had been on my feet for too long or had got over tired or stressed. I would probably have at least one to two episodes a week. Some were quite spectacular so I videoed my toes going in and out of spasm. I had a few comments on the video’s from people who suffer focal dystonia who agreed that the movements of my toes were exactly the same as theirs. Which was comforting, as when I have posted about my feet elsewhere, I have been told to take more vitamin B12 to stop the spasms despite the fact I do self inject vitamin B12 on a regular basis as the NHS doesn’t allow me to have injections on a regular enough basis, around every 2 to 4 weeks depending on my level of stress / antibiotic load / alcohol consumed. So for me B12 deficiency isn’t an issue it is something I am on top of ( I think ). I certainly no longer have the issues I was having when I was deficient which was numb hands and feet, with burning pain in my left leg. I would love for the issue to be B12, when it was first suggested that it was a sign of B12 deficiency last year I upped my B12 injections to every other day for 2 weeks and then went to once a week. It made no difference to my feet. 

The issue with my feet has increased now to the bottom of my feet when not in spasm are very sore, they ache deep inside the muscles of my feet. It is a pain that nothing relieves. This is usually the pain I will get before I get a spasm. So it is very strange that I am now getting that pain on a regular basis with or without a spasm.

So at the end of last week, when things got really bad with my feet, it always seems to be the left one that is the worst, I took some photographs and then filled out an econsult form.

Two of the photos were taken last week and the bottom one was taken in May last year. It can be either foot that spasms but it tends to be my left foot that is the worst. I am always worried with the photos that you can’t see that anything is wrong with my feet.


On Tuesday the doctor from the practice rang me, I had seen him recently with regards to my neck and he was ok. He went through what triggers the spasms, which can be something as stupid as my foot catching the duvet cover whilst I am in bed, to just being sat down and the spasm will sat. There isn’t any rhyme or reason but I do know that being over tired or stressed will cause more spasms to happen and for them to be stronger and more painful. If I am wearing shoes when the spasms happen I have to get my shoes off to try and relieve the pressure but it doesn’t always help and sometimes my feet are in such a weird position I can’t get my shoes off. 


The doctor went through my long list of medications and tried to tell me that pyridostigmine / mestinon can cause muscle spasms. As I have been on and off this medication since 2007 I was able to point out that the life of this medication was 4 hours in the body and that my taking a tablet and when the spasms happen rarely coincides. He wanted to know what would happen if I didn’t take them so I explained I would faint a lot more, I would lose the sight out of my right eye and the right side of my face would drop like I have had a stroke. Needless to say he was a little surprised that this one pill would have such a huge impact on my life.
We have come up with a plan that as I haven’t had any bloods taken for over 18 months that he wants them done, as neurology will ask for them to be done if they aren’t. He wants to see if it is something like an electrolyte imbalance that is causing the muscle spasms. If they find something in the blood work then he maybe able to do something to correct it. After the bloods are done and if they don’t show anything he will refer me to neurology however he will also ask them to suggest medication to help in the meantime. This is all good to me as with Covid impacting every aspect of the health service I will take anything that they are willing to do. 


Obviously at the back of my mind there are concerns, dystonia can be a symptom of other issues rather than just dystonia. I think it is pure and simple dystonia and keep telling myself that. I have had so many tests for other issues over the the years that I just refuse to freak out at the possibility and what ifs. I can’t live like that, I refuse to live like that.


So when I know anymore, you will know more.

A photo of my gorgeous boy to end on a happy note.

Dystonia?

/ RachelMorrisMcGeethemyastheniakid / 7 Comments

**Warning if you hate feet, photo’s of feet this post is not for you”

I have had painful spasms in my feet for as long as I can remember, for a long time I have just assumed that it is part of the Ehlers Danlos Syndrome I have and just put it down to that but I have always felt it was odd that it was only really my feet that were effected. EDS is a connective tissue disorder and connective tissue is everywhere throughout the body, so in reality more parts of me should be going into spasm than just my feet alone. After a particularly bad week with it back in late February / early  March ( before the world went mad ) I ended up consulting Doctor Google to see if there was an alternative explanation (differential diagnosis ) for what was happening, low and behold there was Focal Dystonia.

When I worked out what the issue was it was clear that the UK would soon be heading for lock-down and I didn’t want to be in or around a health care setting for anything that wasn’t urgent and when I say urgent I mean life or death. So I decided that when the madness had passed I would seek medical help but this evening ( I’m talking about Tuesday in Wednesday ) I have been in so much pain with the muscle spasms / contractions I am kicking myself that I didn’t do anything about it. Not that there is a cure but I may have had better medications here to cope with or stop the contractions. When it is as bad as this the pain is no longer just in my feet but travels up my calves along the ligaments and tendons. I can feel the spasms moving along them until it hits my feet and then a wave of pain starts as my toes begin to distort themselves, in rather bizarre ways. I have no control over it at all. I can grab my toes, massage my feet but the minute I let go they once again return to their painful contractions. Often whilst I am attempting to force them out of their distortion I can feel the pain building up again which means another spasm is on its way.

There is no stopping it as the minute I let go my toes move without any conscious effort from me. On a bad night, it is almost always a night I get this, although when I have a very bad night during the day I can feel less powerful spasms on and off all day like I have today, nothing will stop the spasm. Massage will only provide a very short period of relief often just seconds. The only thing I can do is ride it out, apply heat and hope that it eventually goes away.

I have found it very difficult to capture images of my feet as the spasms can be very subtle. Unless you know what you are looking for it can be difficult to see why I am in so much pain. The spasms are always focused around my toes but the pain is felt throughout my feet. On occasion you can see the tension in the skin on my foot as my toes are trying to move in two separate directions. Almost always my big toe and the toe next to it want to go one way whilst everything else goes in a different direction. Spasms have been so strong in the past they have dislocated my big toe ( agony). I have raised this with doctors before who just look at me as if I am a sandwich short of a picnic. Where as now after checking it out on line there is a very real possible cause for what has been happening. I managed to take some photos this evening – my feet are swollen due to the amount of salt tablets I have to take and the toe nail on my big toe is a mess due to having the sides removed over ten years ago due to recurrent ingrowing toenails so my apologies. But without the photos you may not “get” it.

On this photo my big toe is pulling out and down, at the start of a spasm.

 

Just a few seconds later my big toe and the one next to it are twisting and pulling forward whilst the remaining three toes are curling toward the sole of my foot.

In this photo taken a few seconds on again you can see the big toe and the one next to it looks like I am flexing it forward and curling the other toes back. 

As I said it is hard to capture especially as it mainly only shows in my toes and make not look that strange to other people but the pain it produces is off the chart.

I managed to get this short video

The gasping noise is me due to the pain the movements are causing me. This was taken at around 9pm last night and it is now coming up to 2am and my feet are both throbbing still from the pain this 30 minute episode caused me. The pain and weird feeling I get afterwards extends all the way up to both knees. It is always my left foot that is affected the worst and whilst this was happening my right foot was joining in to a lesser extent.

I ended up having to take some pain relief and applying a heat pad to relax the muscles and to stop the contractions. Once an attack is underway I have to be very careful how I move my feet for several hours afterwards as it will trigger another round of spasms. Although to be honest it doesn’t matter how I move if they want to spasm they will I have zero control over them.

I have noticed it gets worse if I am tired / stressed / unwell ( more than normal). I have been pushing myself too hard lately and need to drop down a gear, which will be hard for me to do as I feel guilty when I don’t get all my jobs done.

People have suggested that it is low B12 levels that are to blame for this but as I self inject on a regular basis due to my deficiency being under treated on the NHS I really don’t think that is the case. Plus I have some many neurological things going on that I really wouldn’t be surprised if it is all part of some yet unexplained genetic syndrome that I have.

So for the moment I will just try to capture as many images as possible showing the distortions / muscle contractions so that when the situation with Covid-19 resolves or just things go back to a new normal I can show the doctors who treat me.