Dystonia…again

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.

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