Feeling the Feelings and Moving On (Again)

I sat down with a radiologist to go over my MRI on Tuesday. He pointed out this and that and gave an explanation of what this and that actually meant. Concerned about the location of some of the lesions, he asked how my memory was holding up. I told him it was not so great these days, but nothing to worry about. I left feeling confident in the knowledge that my MRI was stable regardless of the progression of my clinical symptoms.

That was until he texted me on Friday and said another radiologist determined there was a possibility that some of my lesions were more prominent from the last scan. My newest scan was done on a 3T MRI scanner, unlike my prior scan which was done on a 1.5T scanner. All that means is my newest scan was done with a stronger magnet and image quality and detail would be enhanced in comparison to the prior. According to the second radiologist, my lesions could be more prominent on the MRI due to the difference in scanner types, however, if my symptoms were worsening it would be a good indication that the lesions are more prominent due to disease progression. To actually say my disease is progressing, I would need to have my neurologist verify clinically that my symptoms have worsened. He did that a month ago at my last visit.

In the words of the radiologist, the progression is “very slight”. You would think that would be good news, and in the grander scheme of things, I suppose it is. But, this is brain damage we are talking about. This is damage to the organ that controls your every thought, breath, heartbeat, and step. This is damage to the part of you that makes you who you are. The control center for your memories, emotions, and all of your senses is being eaten away and destroyed. And, to make it worse, your body is doing it to itself. In the end, it is hard to celebrate the news of slight progression when even that can have dire consequences.

The below image is from my MRI taken on November 1, 2022. I have lesions scattered throughout my brain and cervical spine. They are small, but numerous. I have heard many people, non-medical professionals, say the size of the lesion does not matter and that it is all about the location. I can not confirm if this is true or not. I strongly feel it is simply an internet rumor that was planted in the MS community and has grown like a weed. I have seen images of MS lesions than are nearly two centimeters across. I imagine both location and size play an important role.

I have pointed out the area of concern in this particular image. The area has a small group of lesions. According to the radiologist, they are not larger but do appear more prominent. I am not posting the image from my prior MRI because, without a medical degree in neuroradiology, the images appear exactly the same. I have worked in radiology for nearly twenty years, and I would not be able to distinguish any difference between this and my prior scan. It truly is slight.

The area I was most concerned about is the lesion on my brain stem. It is large compared to the ones scattered throughout my brain and the location makes it concerning that this is the lesion responsible for a lot of the issues I have ambulating. Unfortunately, it is still there. Fortunately, it has not increased in size or given any indication of growing angrier any time soon. In other images, you can clearly see smaller areas of demyelination scattered throughout the length of my cervical spine.

Two years later, I still have not fully come to terms with having multiple sclerosis. To hear the news it is worsening is disheartening, to say the least. I am not sure how one proceeds from this point. I feel like I have already exhausted my options. I am grateful that the progression is slight to almost nonexistent. I wish the disease did not exist at all, for me or for others. I do not have hope that a cure will be found in enough time that it will matter to me. I am genuinely saying that out of realism and not out of any sort of bitterness or pessimism. This disease is my reality and for better or worse I have to learn to live with it now.

I want to keep up the fight. What most people, especially those who are free of MS, do not understand is how hard that actually is. I am tired. I am the most tired I have ever been. Yet, despite that tiredness and crippling fatigue, I have to work harder and do more than I have ever done in my life. I work in healthcare. I see people on a daily basis who are in way worse shape than me. But, mostly because they choose not to do the work. They do not have brain damage. Their legs work and they are capable of going for long walks, or even for a jog. Their arms and hands work. They are able to grip a weight and lift it over their head. They can cook a meal at home instead of going through a drive-through. It is not my business how someone else chooses to live their own life. Those are their decisions to make. It just hurts my heart to see so many abled bodies wasting away on couches. I look at these people and think, “if only I was still able to do the things you are capable of doing!” I dream about a fantasy world where I can swap bodies with someone who does not wish to use their own for any physical activities.

Nevertheless, that is a dream world, so, I push on. I walk the dog, work, walk the dog, cook, eat, meal prep, workout, stretch, meditate, shower, go to bed, and repeat. I worry this level of activity is not sustainable. I have only been at it a couple of years and feel I am already at the end of my rope. However, I know from long periods of depression and anxiety, that curling into the fetal position on the floor and doing nothing is much worse in the long run.

For my next post, I will work on and share a solid game plan for what my next steps will be. There has to be a balance between work and rest. My diet can be honed in some. Vitamins and supplements need to play a larger part in regaining and maintaining my health. My mediation game can definitely be stepped up a notch. I am finally off of the Ocrevus infusions. I feel, for the most part, I am doing things right but there is still room for improvement. I am ready to move on…again.