Results Day or: Black Hole Time!

That MRI I mentioned happened. It is strange to say now but, well, I had a feeling about the results. Not a feeling of huge foreboding or fear. Rather one that said to me….. this is not going to be as good as you perhaps hoped…. not terrible….. but not so good. And so it proved. New lesions. I expected the ‘old’ lesions to be active, great medical expert that I am, the cause of a slight increase in mobility and cognitive problems over the last few months. They are indeed active. And they have new friends. With the slightly unnerving name of black hole lesions. Not something that inspires optimism. Despite that, there may be some good news. Just need to wait awhile.

Those Results

The summary in the introduction is brief but basically correct. Old lesions active, new lesions present. This was explained by my neurologist on a Tuesday afternoon appointment. These new lesions are on the right side of my brain and have that slightly sinister title. Black hole lesions. With my typical, slightly useless sense of perspective the first thing I thought of after hearing this was a couple of songs by Soundgarden and Muse. I mean, big news and I am thinking of bands? I suppose I like to trivialise things as quickly as possible. Make them small.

The implications of black hole lesions are something I need to learn about. Most of the information online about them is currently pretty academic and difficult to take in if you are looking for a simple summary. Lots of information about T2 lesions or something like that. Or was it T1? But the British MS Trust actually had it pretty clear. Lesions where the underlying neuron has suffered irreparable damage. Also Smouldering MS was raised, again something which is a relatively recent discovery for me and which refers to continual and unseen damage caused by lesions. Which, to be honest, does not seem that different to what MS does anyway? Need to learn what the difference is with this particular flavour.

A short summary. There are new lesions. Active and persistent. And having an impact. Smouldering MS, black hole. Whatever. They are helping to screw me up.

How Did It Feel?

Looking at that MRI with my neurologist bought things home. In past MRI’s it looked like someone had sneezed on my brain, covering it in specks representing those lesions, damage to my nervous system, my mind. This time they looked like someone had been digging holes instead. Of course, it just looks dramatic through adjustment in contrast of the images. There are not suddenly huge holes in my brain. Just on that scan they just looked….. black…. and enormous. What is harder to hear is that they are behind the MS progression that I noted in the introduction.

I felt low. Honestly, I felt cr*p. Let down, in a funny way. All this driving forward, physical exercise, keeping my mind active. Staying positive. Isn’t that meant to help?

I actually think it does. Writing this, I know it does. Still going after eleven years. But hearing that news made me feel low. MS is unpredictable and can feel just unstoppable sometimes. I know MS will never leave me. But I did not expect it to launch a new offensive. Forgive me but I felt a little jaded. Low.

Specks of Light Among the Black Holes

Still, there is the chance of Ocrevus, as mentioned in a previous post. That speck of light reappeared at the end of that Tuesday afternoon appointment, a recommendation by my neurologist. Perhaps swallowed in all this talk of black holes but a positive. There is, of course, a ‘but’. MS is my immune system attacking me and Ocrevus will impede certain cells in my immune system, putting it simply. Reducing my natural defences. A risk of reducing immunoglobulins that protect against infection. Lots to consider.

That’s where help will come in, that support that always seems to be there at the right time. The day after the neurology appointment the local MS Nurse called. A blood test has been scheduled for early March to check on some of the issues mentioned above and, straight after that, we will see the MS Nurse to discuss Ocrevus. Benefits and risks. It is necessary to do some research to make the most of the opportunity and make the right decision. The MS Nurse and neurologist will certainly give guidance but that decision will be ours. Important to make the right considerations.

Back in Limbo

So, why wait until early March? Well, a hernia operation late last week was a pretty good reason! The right move to get that sorted first, one less thing to deal with. In recovery mode this week. Netflix, read, scribble, sleep. Between the appointment with the neurologist and my hernia operation I also had a couple of fun evenings. Leaving parties, evenings with friends, chilling at home. Chatted about everything with family and close friends. Helps to put those black holes in to a bit of perspective. A little further away.

Still, it’s back in limbo for a short while. That limbo that seems to accompany any kind of development, right from that initial diagnosis. something always needed confirmation. An initial wave of optimism always seems to be tempered by a hit of pessimism. It seems they cancel each other out leaving me in a no-man’s land. But there is the clear chance that there may be some sort of way forward. I will take that.

On the hernia, to prevent misunderstanding for Dutch chums, this was an Inguinal Hernia, or liesblessure in Dutch. The English just say hernia generically. Hernia in Dutch is a trapped nerve in the back and/or legs, I think….. And the operation went just fine! Recovery? Work in progress. I miss my bikes, though! Which sounds pretty healthy!