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.

Covid 19 / Corona Virus

I hate to be one of those people who look like they are jumping on the bandwagon but even I am finding it hard not to get a little anxious about the huge fucking elephant in the room which is the Corona Virus or Covid 19 to give it, it’s official term.

https://www.nhs.uk/conditions/coronavirus-covid-19/

People I talk to about it automatically assume that as I go out very little I am effectively self isolating / quarantining myself. What they forget is that Mr Myasthenia Kid works in retail, after healthcare probably one of the worst occupations to be in for exposure to this virus. Why? well because of customers firstly, many of these superstores have customer bases in the tens of thousands not just the 100 people that you may notice whilst you are in store shopping. Then there are the staff, who will drag themselves into work rather than face the indignity of the attendance policy and have a black mark against their names. So we have the 7th circle of hell right there. So whatever Mr Myasthenia Kid is exposed to rest assured he will unwittingly then be sharing with me. And that really concerns me.

Technically I am not in a high risk group, although I have PoTs it isn’t an issue with my heart. It is a problem with the autonomic nervous system, whilst when I get an infection it makes the PoTs symptoms a million times worse ( causing more palpitations, shortness of breath and syncope / fainting) it won’t kill me, unless I happen to faint in a dangerous situation. EDS also doesn’t mean I am at any higher risk, my only issue is that whilst I am used to joint pain etc – it still hurts, I can’t lie around in bed for days without causing myself more pain due to my back. So whilst I may feel like I need to be in bed I will have to get up and sit / lie on the sofa to ease my back. What worries me and is the name of my blog is the possibly seronegative / undiagnosed Myasthenia Gravis that I have been dealing with since 2007.

Myasthenia Gravis can cause a respiratory crisis which means the patients muscles become paralysed and they can no longer move their rib cage or diaphragm and therefore can’t breathe. I have been blue lighted to hospital back in 2008 with such an issue and was very close indeed to being placed on a ventilator so that they could take my breathing over for me. I was taken immediately to resus and placed on oxygen at 15 litres a minute. After a few hours I was doing a lot better but I was exhausted and slept close to 48 hours solid after that little adventure. I still have home Oxygen now a cylinder and a concentrator as I have the super power of suddenly being unable to breathe properly. I also use the oxygen in the treatment of my migraines, when I am not in such a bad way that I can’t remember I have it. So this is my fear, whilst technically I don’t have a diagnosis of Myasthenia ( when I started the blog I did it was removed in 2009/10 ) I respond well to the treatment of Pyridostigmine Bromide also known as Mestinon which resolves my ptosis and weak muscles within 30 minutes of taking it. Maybe it isn’t MG but some other neuromuscular issue whatever it is this is what is scaring me about Covid-19.

My other fear is should I be unlucky enough to end up seriously ill with the virus, a doctor with no idea about my life or the quality of it could ( due to limited resources ) be making decisions about whether or not my life is worth saving. They may not realise that I have lots of friends, a loving husband, a gorgeous doggy, a very happy fulfilled life with my sewing / embroidery / quilting. That I help run the largest PoTs Support Group on Facebook for the UK and ROI ( nearly 5k members) all they will see lying in front of them is a disabled woman who hasn’t worked for 12 years and is my life worth less due to their views on disability? I have actually found those in the medical profession can be the ones with the worst attitude towards the disabled and do see things as black and white as who is economically worth saving. The medical profession like all walks of life hold a variety of views on the disabled some nice and some totally abhorrent. I should imagine their are many other disabled people out there worrying about whether their lives will be deemed worthy enough to save should difficult decisions have to be made because resources within the NHS ( ICU beds, HDU beds and ECMO machines).

In some ways this all feels like we are sat here waiting for the zombie Apocalypse to start. There have been many complaints that the NHS 111 website is potentially missing many thousands of possible Covid-19 sufferers due to the questions it is asking. Basically unless you have been to an area that is now rife with it or have been in contact with a person with a diagnosis of Covid-19 you aren’t being tested. The main issue now is that many people who have this illness very mildly are  now amongst us spreading the virus and there will be those who are super spreaders who show no symptoms themselves but pass it on to everyone around them, latter-day Typhoid Marys if you will. There are so many known unknowns with this new illness that no one is quite sure how badly countries will be affected.

The fact that just this morning ( Wednesday 11th March ) The Bank of England has cut interest rates and they believe that the UK will now be entering a recession just adds to my concern that this is going to be a very scary time. When have you ever heard of the Bank of England cutting interest rates due to a virus?

I know many people who read my blog will have their own health anxieties and I really don’t want to add to them. But I do believe it would be ridiculous not to talk about this. I can’t be the only one that is worrying and I want to let you know it is ok to be concerned and to practice extra hand-washing. Whats not ok is to let your fears take over your life and stop you enjoying life.

So just some practical tips – not encouraging bulk buying in any way

– Ensure that you have all your regular medications and keep on top of your repeat requests. Just so you don’t run out.

– If you were to have to self isolate do you have family members or a friend who can get shopping for you? reach out on local community pages and find out if there is anyone willing to lend a hand should you find yourself in this position and you have no close friends or family nearby.

– Ensure you don’t allow yourself to run out of the basics. Keep a note pad in your kitchen and when you see something is running low write it down. Then next time you go to the shops or have some one go / order online you won’t forget. Again I am not encouraging bulk buying but ensuring you have enough to last a few days so that you aren’t in a situation with nothing at all.

– Wash sheets and towels on a 60 degreeC setting to ensure you kill as many germs as possible. Try and stay on top of these tasks so that at least you have clean towels and bedding should you get sick.

– If you don’t have it set up get internet banking or a mobile banking app set up. So you can pay bills, buy online etc So if you are sick you don’t have to worry about getting to a bank etc 

– Have pets? ensure you have their food in. We did a bulk cooking session for Dembe on Sunday and have frozen it. So if we are sick he will still have food. If you have a dog and they need walked speak to friends and family and see if they will help out should you need it.

– Ask anyone that visits to not come if they are feeling under the weather. If they are bringing stuff to you get them to leave it on the doorstep. I would rather upset someone by saying I would rather they didn’t spread their germs than have them coughing and sneezing all over me.

– If you have prepayment metres and can afford it ensure these are loaded up. If you can’t speak to your supplier and see if they can help at all should you become ill and not be able to top these up. Many people are going to be in the same boat, so I should imagine they will be getting plans in place to ensure customers are supported. The press will have a field day if people are being left without power.

If you can think of any other hints and tips please leave them in the comments.

Stay safe and stay well.