It’s taken some time to put pen to paper recently. Or finger to keyboard, to be pedantic. There are two issues behind this. One is that Covid has made life a little quieter. The grand targets for this year are gone, hopefully back next year. That means less to talk about. Who needs another blog about Covid and what it is like to interact with everyone remotely? Seen it, done it. The other issue is progression. Of Multiple Sclerosis. Is my MS progressing, or isn’t it?
Progressive MS is meant to progress, after all. Progression here means things get worse, not better.
But this is MS. Nothing is simple. I have leant that!
Symptoms, Symptoms, Symptoms
Forgive me but, for something so important, I can sound a little wearied when talking about symptoms. But, it can’t be helped. When you analyse everything you do for signs of MS it can get like that.
‘Oh, more symptoms. Joy! Which hand is trembling n0w?’
It’s a very fine balance between controlled analysis, paranoia and complete indifference. What to ignore and what not to ignore? What is new and what is same old same old?
It is always new symptoms that focus the attention. Especially unusual ones. And scary. My left hand was under a hot tap and…. the water didn’t feel hot. All that I had was an annoying tingling feeling. Something new. Alongside this came an alarming worsening in walking and – horror of horrors – the right leg started to weaken when cycling.
F*ck everything else. Weakness when cycling? That is bloody terrifying!
Let’s not be too nonchalant, though, this is alarming stuff. Combined with cognitive issues increasing and there are clear signs of progression. Fearful. Worrying enough that my regular MS Nurse and Neurologist were contacted. An MRI resulted followed by a week’s wait for the results.
Which are, after all of this build up…… (cue drum roll)…
I won’t get in to detail but the neurologist and radiologist don’t agree about a new lesion that has been found. A second MRI with Contrast Agent introduced suggested to the radiologist that here we had a potentially different type of lesion. So possibly not Primary Progressive but another form. This could be good.
But nothing is certain at this stage.
How do we get certainty? Another MRI. But lesions take time to grow or not to grow. So we need to wait to give it all time to develop. So the next MRI will be a year from now. With that will come certainty. Or perhaps it won’t.
I have written about twenty versions of this post. Rejected them all as perhaps too downbeat. After all, this development could be positive. A different form of MS that can be treated. Remitting Regressive? The fact that some of the symptoms, such as not feeling hot water, have gone are indicative of this.
But the weakness on the right side continues to show progression. Walking long distances is becoming more difficult, there is numbness after long or fast bike rides and the right hand can really have a mind of it’s own. I will whisk a salad dressing and finish and the hand….. well…. it carries on whisking!
‘No, leave this to me! I like it! I haven’t had this much exercise in years!’.
Nothing is simple, though. The if’s and buts that started my ‘MS Life‘ were back again. The issues I had may also have been caused by illness in the beginning of March with a fever, something that impacts MS. No, I don’t think it was Covid, before anyone asks. I self isolated just case but… nothing is sure.
A Different Time
There may be a year to wait for certainty and this may be a return to a past time. But it isn’t. When this all started, we were totally alone, my partner and I. Now, it’s very different.
I have a rehabilitation clinic to help me. The physio helps me improve my walking learn how to better balance energy so the right leg doesn’t give up on me. The long distance cycling continues! There is occupational therapy, reminding me that is so important to plan the day. Same for everyone but I just have less resource to play with. And there is a psychologist because….. well, it’s not that easy. And a rehabilitation doctor takes all of these strands and gives them a structure. A lot of support.
The difficulty will come in deciding how to go forward. This could be progression. That is what happens with Primary Progressive MS. Or it could be different symptoms. That may only be known a year from now after this next MRI,
And what is different? In the end, what has changed?
No matter what, and this is where this post has been a real struggle to write, I will need to make choices. Working less, exercising less, or doing both differently. The confrontation comes in that MS forces me to make these choices. All the specialists in the world are helping me and I have all the support I could ever need.
But I still need to make choices. And I don’t want to.
I like the posts in this blog to be optimistic. That is not always a reflection of how I really feel, to be honest, but it is important to focus on the positive. Even with all the support I have, from medical specialists and also from those around me, the fact is that change has been forced on me and will continue to be whether I like it or not.
The trick will be forcing myself back in to the habit of making the best of the good days. Enjoying them. Accepting that all days will not be good is part of that. But I think I would rather write about cycling up a mountain.
I’ll just have to wait awhile.
In the end, what has changed with my last MRI? And what will change with the next? We’ll have to see.