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'Twitch, Twitch'

Fasciculation. noun. fas· cic· u· la· tion fə-ˌsik-yə-ˈlā-shən, fa- : muscular twitching involving the simultaneous contraction of contiguous groups of muscle fibers.

The most common question and worry that I am asked more than anything else over on my TikTok page relates to muscle twitches. I receive a handful of messages or comments each day from people who are likely to have consulted ‘Dr Google’ with these symptoms. Having done this myself, pre-diagnosis, it shows hundreds of thousands of results, and from my own personal experience, leads you into a rabbit warren of worry and numerous medical pages which have no medical background to support the content that is being read. For those reading this that are based in the United Kingdom, I would recommend NHS material, as well as heading over to the MND Association website, which has lots of information.

** I am not a medical professional ** in any capacity, but I can give you my lived experience of the disease and the muscle twitches which many people experience with this illness. Once again, I am not a doctor or neurologist, and this is purely my own experience and opinion. But rather than making videos, I felt it was right to create this space where people can read my own story, if that brings any comfort to you.

Looking back, I do not recall feeling these involuntary twitches, however, as it took almost a year to be diagnosed, it is likely that I was having these twitches, but simply ignored them.

It is only during the diagnostic process, and once MND was confirmed that I really paid more attention to the twitches, and I shall try to explain as best as I can as to what they feel like, but please do remember that MND symptoms differ from person to person and are not all experienced in the same way. One of my first video on TikTok was showing a muscle twitch in my right shoulder area. As you will see, the skin and muscle can be seen to twitch in quite a frantic way, but then soon stops.

I do not feel the twitches every day, however when I am aware of them, they can be very frustrating as it's feels like they are constant for few minutes or even a few hours. There is no way for me to control them other than to let the twitches do what they need to do. Do bear in mind that there are thousands of reasons for muscle twitches, which may not be likely to be as a result of MND. For instance, stress and fatigue can cause muscle twitches as well as iron deficiencies amongst other scenarios. Therefore, I know it is easier said than done, but I would refrain from spiralling into diagnosing yourself via the Internet. If you are aware of twitches, speak with your GP and monitor them to see if there is a pattern of any kind. Seek medical advice before anything else. There is no definitive test that diagnoses MND, it is a process of elimination from a multitude of tests.

Having experienced muscle twitches before in my eyelid, and in my arms and legs years ago, I can only consider these were as a result of tiredness and stress from what ever I was going through at the time. The twitches I am aware of now are so very different to what I would call "normal "muscle twitches. The only way I can describe them, that they feel like something is crawling under your skin for a few moments, minutes or hours. Most recently, I had a Reiki session and was very relaxed, but was very mindful that I could feel the twitches up and down my arms, almost like my arms were dancing involuntarily, and there was nothing I can do about it. They have just become a normal part of my life, and I try to do my best to ignore them. The twitches themselves can be present anywhere within the body, and that is the unpredictable nature of MND itself.

I do hope this has been of use to you and informative, but if you are worried, please see your GP to discuss your concerns. I am more than happy to share my TikTok videos about the twitches, but felt it was appropriate to signpost people here to understand from my own experience as to what the twitches feel like and mean.

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