A blog should reflect what is going on at the moment. At least, I think it should. It should be real as well. So here is a post on another instalment of the roller coaster ride that is life with MS, starting tomorrow. I really think that no matter what, the end of this part of the ride is going to be positive. Still, it is on my mind. Not real worry, just a bit of hope combined with some concern that this will come to nothing.

Possibilities

I will be honest, I am not so good at keeping up with news on MS. There are a couple of reasons for that. After living it for so long I tend to ‘tune out’ sometimes and like to read about other things. There are also so many sources, so many webpages, and some are absolutely fantastic whilst others are rubbish. Fortunately a lot of people around me still do, including my sister. She passed on an article from the British MS Society about the treatment of Primary Progressive MS. This included the use of Ocrevus for early PPMS, a relatively recent possibility. I saw ‘Early’ and thought…. that’s me out. Then I saw the definition of early. Between ten and fifteen years since diagnosis. Interesting……

There are further prerequisites, such as not yet in a wheelchair (check). There is also the need for the MS to be active, meaning the lesions are growing. Lesions being the scars on my brain and spinal cord that are consequences of my body attacking itself, putting it very simply. These requirements are for UK MS patients but the requirements for the Netherlands are similar in that the lesions need to be active. So the roller coaster ride starts with an MRI tomorrow, the results of which will be compared to my last MRI to see if there has been any change in my lesions.

Fast Track

This MRI was arranged rapidly. An e-mail to the local MS Nurse outlining the article and also explaining that my walking had declined significantly in the last five months or so. This had become noticeable on a (rather fun otherwise!) trip to Brussels and also on a New Year trip to the UK. On the latter, a small hill that I had walked up many times became a real struggle.

This may not be down to lesion growth, though, and can be weakness as a side-effect of MS. It could also be something called Smouldering MS, which I won’t try to describe as it is new to me! Therefore the MRI is needed to confirm whether or not the lesions are active. This will be my first MRI at Hilversum hospital as opposed to previous MRI’s at another, more local hospital. So I am hoping that it will be newer and maybe has a different, more modern selection of music? A little flippant, as the last MRI I had I fell asleep anyway, no mean feat considering the noise!

Positive Outcomes

To be honest, there is not much else to say about the MRI. For such a significant event there is not much to say, just an hour of laying around. A dull beginning to this latest roller coaster ride that will last a couple of weeks until an appointment with my neurologist. Then the results will be disclosed. If the lesions are active, Ocrevus will be discussed. If they are not active? Well, it is quite possible that my issues are a consequence of MS as opposed to caused by MS. Treatment with physiotherapy and staying active.

Both outcomes of the MRI are good. Honestly! If my lesions are growing? Well, something can be done about it. This is not a cure for MS. But it will help to check the progression. The issues with balance, concentration, cognitive, speech. They will not go away but hopefully they will stabilise. If the lesions are not active? Also great! Then there is a stable basis for ongoing treatment.

Back On the Roller Coaster

So why be nervous? Well, I am glad to say that all this time with MS has not desensitised me to living with it. I can be too flippant about it sometimes. ‘It’s Primary Progressive and it’s progressing’. The reality is that I still have so much to do. There is a mountain for this year (will post that later). There are places to see. Things to do. Bands to see. I am still hungry. But the loss of mobility, whilst by no means total, is a reminder of what progression means. The results give a couple of chances to check that progression, hence the optimism. But also the nervousness. Will this make a difference? Is this negative progression unstoppable? Back on the roller coaster ride that comes with having an illness like MS. Perhaps the end of this ride will lead to standing still for awhile. No progression.

And, you know what? That would be just fine…..


2 Comments

Valerie Murray · January 21, 2024 at 15:35

Will be thinking of you. Hope you get the outcome you want. You are an inspiration Steve.

Peter · January 21, 2024 at 18:37

Empathy alone never enables me to appreciate exactly where you are with MS Steve, but your article helps a lot. Good luck with the findings.

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