One thing that I have realised after living with multiple sclerosis for almost 25 years is just how variable it is. I was initially diagnosed as having ‘relapsing remitting’ MS (RRMS). I was never sure when the next relapse would arrive. At one point, I went a whole 8 years without a relapse, feeling great with no MS symptoms, then I had 3 relapses within 18 months. As time has gone on, my relapses have stopped but the progression of my disease has become significant.
Have I moved into ‘secondary progressive’ MS (SPMS)? My heart says yes; I seem to fit the criteria perfectly. But my health care team seem to be reluctant to provide me with this label, perhaps because there are fewer treatments for SPMS and they are keen for me to continue on a Disease Modifying Drug (DMD) to see if it can slow my progression. I am happy to try anything I can that may help, hence being on Tecfidera, and changing my diet and lifestyle through the Overcoming Multiple Sclerosis programme.
One thing I remember reading about SPMS is how the diagnosis can be a relief for some; how the certainty of knowing that they aren’t going to be suddenly struck down with a relapse really helps them to not live under a cloud of worry. However, whereas I don’t worry about relapses anymore, I do still feel apprehensive about what is potentially to come. How bad is it going to get? Will I plateau? Will new symptoms arise?
MS affects everyone in a different way; symptoms can change hour by hour, day by day, month by month and year by year. I thought that it would be useful to document how my MS is affecting me, both positively and negatively, bit by bit over a few posts. It’s easy to forget how and when things change – I know that I will have the (insert sarcastic voice here) joy of having to reapply for my PIP next year and having that written reminder can really help.
I thought that I would start today with the physical symptoms I have – not least because these are what impact on my life every day. I am currently off work due to my symptoms and I am contemplating ill health retirement. Talk about massive changes and decisions!
Physically, I am affected by:
- Heavy left leg – like having a massive bag of sand strapped to my foot, making it difficult to raise my leg. As a result I use mobility aids (crutches, a scooter) and walk strangely, often flinging my leg out in a bid to get my foot to clear the ground
- Clonus – rhythmic movements of my ankles when my leg is in a certain position (often when I am using my scooter and getting jarred by the road). Disclaimer – this is NOT my leg! 😂
- Spasms and cramps – I am currently looking into alternative medication to Baclofen to help this – I am woken by painful cramps in my feet and toes and have spasticity in my right leg, I guess because of all the extra work it has to do in lieu of my left
- Poor balance – check out this bruise, acquired by stumbling into the bath ledge whilst attempting to get into the shower:
- Weak left arm and hand – impacting on my ability to type for long periods or to lift cutlery for sustained periods
- Fatigue – the feeling that no matter how much sleep you get, it is never enough. Naps are a necessity to help me function. Fatigue is my number one reason for struggling with work – it brings on other symptoms such as concentration difficulties, word-finding difficulties and memory lapses
- Flushing – sudden reddening of the skin as a result of my Tecfidera use. There doesn’t appear to be any rhyme or reason as to when it occurs but it happens about once a week or so
- Heat intolerance – very well known to MSers – I have had to wave good-bye to hot sunny days and hello to shade and cold G&Ts (so not all bad!) I am also affected by cold, for example getting into a cold swimming pool can set off my spasticity
So, these are the the things that come to mind when I think about how my MS affects me physically. I would love to hear how it affects everyone else – is your list the same?