This year’s theme is #MyInvisibleMS (https://worldmsday.org) – which I think is a very important theme as the invisibility of symptoms is a big barrier to diagnosis. With women more likely to get MS or other autoimmune diseases this adds to women not being believed. On my journey to a diagnosis it was hinted that all of this was probably in my head – and as many MSers say: Yes it is but not the way you thought.
I have written about other aspects of my Life with MS in this blog: MS adventures But I want to go with the theme so here are my invisible symptoms in order of appearance:
2008: Numbness in my feet was the first symptom I experienced and I noticed it when I started running again – I couldn’t feel the ground properly. This actually led to some tests including a brain MRI – to exclude MS. However, technology wasn’t advanced enough and my tiny lesions weren’t detected and MS was excluded as a cause for my symptoms.
2013/2014/2015: Dizziness, MS Hug and more numbness happened in that time period and I can’t quite pinpoint when exactly as I got misdiagnosed or dismissed by my GP. I had also moved to England during that time and not all of my info was available. When I asked for a follow-up MRI I was told that we didn’t need to waste the money for numb feet. I also started to experience numb hands – which I thought was related to my mouse and keyboard and never got checked out further.
The dizzy spell lasted for 2 weeks and I couldn’t walk a straight line – the GP said it was an inner ear infection and by the time I started taking medication for that the relapse was over and I thought nothing more of it.
The MS Hug came on while out cycling – I would get really breathless and had to stop exercising. The GP suspected asthma and I got an inhaler (without further tests) – my friend who actually has asthma was suspicious as I recovered very quickly once I stopped exercising. After I moved back to Scotland (2015) I had an actual asthma test which was negative – so it must be the heart. I went for a VO2Max test to have that checked out – where I did so well that the nurse asked me: Why are you here again? There’s nothing wrong with you. Making me feel really crap as I knew different and just wanted to know what I was dealing with. At no point was a neurological issue questioned.
2016: Numbness and Optic neuritis: at the start of 2016 I got numb hands again which went all the way to the shoulders and felt very different. I went to the GP who immediately told me it was carpel tunnel. Even after I said I wasn’t sure as it felt different to that. In March, as I was preparing for a big industry meeting I got optic neuritis. As before I dismissed this as related to stress, looking at a screen for long time periods to prepare for the meeting. When it didn’t go away after 5 days I did panic and went to the optician who suspected optic neuritis and got me transferred to the hospital for further tests. Those tests confirmed his suspicion and I didn’t think anything else of it. Then I got a phone call from my GP: Since you have numbness and optic neuritis we need to check that it ins’t anything neurological. And so started my journey to my diagnosis on 18th November 2016.
The time between that phone call from the GP and the diagnosis were really tough as I was told that I might not have MS but rather imagine these symptoms – by a neurologist nonetheless and mostly because I didn’t fit her understanding of what an MSer looks like. Since MS is also known as the snowflake disease because it impacts everyone differently this was a big error on the neurologists part.
Since my diagnosis some more symptoms have joined the list – and all are very common: Muscle spasms: I mostly notice these on long days when I’m really tired or after strength exercise and stretching.
Fatigue: Probably the most annoying symptom as it is very misunderstood (No I’m not that kind of tired) and I still haven’t figured out what triggers it and the episodes are still very unpredictable.
Brain fog: Since starting Tecfidera in Jan 2018 this has reduced a lot but it can come back on busy days or when I have to process a lot of information: noisy pub while holding a conversation for example.
Bladder issues: I have always needed the loo a lot but recently the need to go comes on like lighting and I have to GO. So I got myself a radar key to access more toilets.
Migraines: This is my newest symptom and seems to come on after teaching (long hours of concentration) or if I can’t be in my desk chair at work (meetings etc) so I now take my chair with me for any meeting over 1 hour and try to do stretches during the day to minimise stiffness.