I continue to be off work for the time being, awaiting my Access to Work report regarding adaptations and aids that may support me to remain in work. All this time off has done the world of good for my MS, I have to say. Unfortunately, I can’t say that my symptoms have magically disappeared, but I have found them a lot easier to manage, as I have had the time to rest, sleep and stretch as much as my body needs to. Whether it is because I have had more time on my hands to think, or because they have been changing, I am unsure, but I have been much more aware of my symptoms over recent months.
I have written before about how my MS affects me, both physically and psychologically. Over the past year, since taking up blogging, I have had the opportunity to make new ‘MS friends’ within the world of social media and it is amazing how much I have learned just by chatting to others with the same disease. I have been living with MS for almost 25 years, but I still learn new things from the online friends that I have made.
It is said that MS is a ‘snowflake disease’ – no two people are alike, despite having the same diagnosis. There are common symptoms – tingling, numbness, fatigue, weakness – but the severity of these and the progression of the disease will differ for everyone. One thing is for certain: there are some freaky-weird symptoms associated with MS. The kind of things that you can often only put down to MS after being diagnosed with it. My first symptom (as a young child, before being diagnosed at age 15) was the feeling of water trickling down my back. I used to tell my Mum that I hadn’t been dried properly or ask her to look at my back and she would have to convince me that there was nothing there.
Lhermitte’s sign – an electrical sensation that runs down the back and into the limbs, particularly when the head is looking down. The sensation can feel like it goes up or down the spine, is generally considered uncomfortable and is a classic finding in MS. Bizarrely, I find that mine is triggered when I am tired and run down and then need to go for a wee (sorry for TMI!). I also get ‘sensitised skin’, particularly on my face, almost as if I have burned it and it is painful to touch.
Brain Zaps anyone? This symptom was brought to my attention by my Twitter friend Mal (see his fab blog here). Mal describes his brain zaps as feeling:
‘as if the brain has been suddenly jolted by electricity or a strong electric charge, like a flash of bright light inside your head. It’s not painful.’
Brain zaps are not something that I have experienced, but a quick google search tells me that they are more common than I realised in the world of MS.
The MS Hug… awww, sounds like a lovely little present that MS has given us just at a time when we most need a cuddle, right? WRONG! The MS Trust describes the MS hug as feeling:
“anything but friendly, cuddly, comforting or gentle. It’s a tight feeling, usually around your chest but sometimes around your hand, foot or head. It may feel so tight around the chest that you feel like it’s a bit difficult to breathe. Sometimes, it can squeeze you really hard and not let go in a hurry”.
It is thought that the MS hug is a consequence of spasticity and spasms, for example of the muscles between your ribs.
Word-Finding Difficulties (and memory loss, problems concentrating, the feeling of a ‘fuzzy head’). All of these are examples of ‘cog-fog’ or, in other words, MS messing with your brain’s cognitive functions. As time goes on, I am finding that I suffer from cog-fog much more – not good for someone who works as a speech and language therapist, I’ll tell you! Luckily, it usually happens when sitting at my desk or whilst at home. Sometimes it can be funny, as I come out with random word errors, other times it can be frustrating, as I find it more and more difficult to focus on more than one thing at a time (shh! don’t tell the husband). I get distracted by loud noises and busy environments – our kitchen is particularly stressful at dinner time, as often there will be music on, the kids will be arguing and their dad and I will be trying to encourage them to just sit and eat.
These are just a few of the stranger symptoms experienced by some of those of us with MS. I find that they:
- occur randomly
- often without warning
- can be exacerbated by stress and fatigue
- are classic ‘hidden’ symptoms of MS that others without MS can find difficult to understand
‘Overt’ symptoms of MS, such as walking difficulties are usually what people associate with the diagnosis. But even these will feel different for each MSer – for me, it’s like I permanently have a sandbag attached to my left leg whilst I am walking in flippers (hence the need for crutches/a scooter). In the past, when things weren’t as bad, I just felt generally a bit uncoordinated – I would miscalculate distances and stumble when there was nothing on the ground. It is easy to see why the ‘I’m not drunk, I have MS’ T-shirts came about.
The reality is, for many people with MS, their symptoms are ‘invisible’ to people other than themselves. Sounds strange, but when I first got my crutches, they actually gave me more confidence. Almost like they legitimised my illness, making me happier to use my blue badge, as they showed that I was ‘properly’ disabled (whatever that means). Stupid I know.
So, what are your strangest symptoms? Did you have them before you were diagnosed with MS? I would love to hear!