This is My MS – 29 Years Diagnosed

Time for an updated post, all about the physical symptoms that I experience as someone who was diagnosed 29 years ago. I last summarised my physical symptoms in June 2017, when I had not yet been diagnosed with secondary progressive MS, but I suspected that I did have it.  I was right (which doesn’t happen often!) and I was officially diagnosed as having secondary progressive MS in August 2017. Trust me to be right at a time when I really didn’t want to be!

So, is there very much change since the diagnosis? Well, not massively. It is safe to say that the symptoms that I had back in 2017 remain to this day, though, unfortunately, are a bit more pronounced.

Before highlighting what those are though, I should perhaps premise this list by saying that, although I was transitioning into secondary progressive in 2017, active inflammation was still occurring in my brain. In fact, I had a small relapse in the run-up to my secondary progressive diagnosis which was very subtle – the right side of my face felt a bit strange from my right temple down to under my eye. It only lasted a week or two and I only recognised it as a relapse due to my neurologist testing my sensation in the run-up to the SPMS diagnosis.

This relapse, and the subsequent MRIs that I had, confirmed to me that my MS was indeed still progressing, despite a distinct lack of relapses for the previous 10 years. I suspect that when my mobility and symptoms started worsening, I did actually have ‘smouldering MS’.  This is defined as ‘progression independent of relapse activity’ or PIRA (you can read more about that here).

I thought that it would be a good idea to share this infographic again, as it summarises the issues that I have.

As I mentioned above, I still have all of the symptoms that I had back in 2017, but they are much more acute particularly the following:

Bladder

I am now on some medicine (solifenacin) as my urgency is marked and I need medication to control it.

Heavy legs and weakness

Have extended from my left leg to my right leg and both arms, so I find it difficult to carry items, grip items or carry out everyday tasks, such as fastening jewellery or using buttons. Unfortunately, I have also noticed that my core has become weaker, meaning that I sometimes find it difficult to sit up straight. I continue to use crutches and a mobility scooter and have started using a wheelchair sometimes and, for short distances in the garden, a rollator/walker, since 2017.

Spasticity

Seemed to heighten after my HSCT treatment; I don’t know whether this is just a coincidence or not, but many who have had HSCT have reported increased spastiity following the treatment.

Chronic pain

Has become more pronounced and I take medicine (duloxetine) to help this.

Balance

My increased spasticity, combined with weakness means that I find it difficult to remain upright and balanced at times, which makes it difficult to prepare food in the kitchen for the family or to stand without my crutches.

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I often wonder how much more my body can take and I get upset about it (I’ll talk about this more in a post about how MS affects my mood and mind).  I suspect that I feel frustrated about it, due in part to the lack of accessibility that we have in many parts of Britain, including my little town. I’m also struggling to find suitable housing options for me.

However, I’m still grateful for many things: my laptop – as it allows me to voice dictate these blog posts, my family, and my mind. It allows me to still see a small number of children for speech therapy and also remember all the words to cheesy 90s/early 2000s songs, ha ha.

Till next time,

3 years since HSCT for MS Back to Blogging