I like to think I’m special, unique, and wonderfully complex in life but those adjectives are not ideal in medicine. Unfortunately, my MS progression has been anything but boring, typical, or normal. Much to my regret, my disease progression is unique and complex.
In the beginning
I remember when I was first diagnosed asking questions of my neurologist like “what symptoms should I expect?” and “what am I looking out for?” I was told disease progression is monitored by number of lesions as well as the surveillance of active lesions gleaned through the administration of contrast during the MRI. Then and now, the newly diagnosed fear MS equals life in a wheelchair. My doctor at the time told me that she couldn’t predict how my MS would manifest. I was told I had a life-changing diagnosis with no cure but then pushed back into the world without a roadmap, direction, or assistance. Without parameters, I feared everything. I assumed the worst of my disease and found fear and uncertainty to be my new companions. Alone and reeling, I spent a lot of time thinking my medical team got it wrong. Clearly the diagnosis was a mistake. Simultaneously, I contemplated progression and increased disability.
Five years following my diagnosis I had my first brush with limited mobility when my legs refused to lift, to move, to function as they had days and moments before. Four years after that I underwent HSCT. The funny thing (read sarcasm not ha-ha) is that my MRIs were always stable from 2018 to present day. MRIs, for those who are unaware, are one of the biggest if not the biggest indicator of disease progression currently available. The MRI and the lesions shown in my brain imagery, were one piece of the diagnosis puzzle, but remain the main clinical evidence of my illness. And yet, my MRIs are considered stable. There were no changes either in number or size of lesions or loss of brain mass. Where did that leave me then and where does that leave me now?
A pivotal conversation
In one of my routine visits several years ago, with the incredible Dr. Justin, we had one of our infamous chats about the clinical news of stable MRI results. I can’t speak for him, but I can imagine it’s exciting as a neurologist and MS specialist to have good news to share. I would venture a guess, that there is relief in an otherwise difficult and emotionally taxing day to tell a patient that their tests are normal, they are stable, their disease is not progressing. Justin came into the room, sat next to me, and shared this seemingly good news.
I was not having it.
My challenge throughout my medical experience has been not only how my medical team communicated but also how I receive the information they convey. Said another way, there is often conflict in what science and medical experts know and what patients with lived experience well… experience. It’s great that the fancy pictures did not show progression, but walking was hard, standing was hard, fatigue was increasing. I was unequivocally getting worse.
As a patient, I want my doctors to have the answers, a clear path, guidance, expertise, and an answer for everything. In the world of chronic illness and diseases with no cure, that is like finding Never Never Land or the elusive cupboard to Narnia. It’s not possible, it doesn’t exist, it’s pure fallacy. They have an idea, they have a blue print, they have recommendations, and they have current protocols, tests, tools, and research. But it’s unfair and wildly unrealistic to expect them to have the answers. It’s hard in my dark days weighted down by disability to remember they are human. It’s called medical practice for a reason. It’s a practice, it’s not perfect.
What was good news for Justin was confusing and demoralizing news for me. While my MRIs were stable, I was declining and fast. My mobility was eroding consistently. I was losing function, stability, and stamina and I had no idea how to combat this phenomenon. I thought I was doing everything in my power from nutrition and dietary changes, energy management, physical therapy, supplements and more. How could my disease be changing without any clinical indicators?
I remember chatting with Justin about the fact that a stable MRI didn’t feel like a big piece of information. It didn’t come off as good news to me. I didn’t take it as a positive sign. Everything I had learned up to that point told me more lesions meant more disease. So why was I getting worse? What was I doing wrong? Why couldn’t he help me?
My medical team and I discussed the fact that neurodegeneration is harder to measure, changes rapidly, and won’t necessarily show up on the MRI. It also merits a mention that we don’t have drugs targeting this aspect of the disease. I could write in tedium about the medical guidelines of relapsing remitting MS versus primary or secondary progressive but the pertinent information is that we are all doing the best we can with the information and resources available.
I have old lesions in my brain and my cervical spine. I’ve taken to the analogy of pushing on a bruise. I’ve learned that chemotherapy, shingles, and extreme stress push on each and every MS bruise I have causing a devastating physical impact.
I shared my emotional, unedited response to Justin’s good news. I tried as best I could to state that MRI results can’t be the only tool in the toolbox and a stable MRI needs softer language when conveyed to a patient with extensive neurodegeneration. As expected, he was receptive. The Expanded Disability Status Scale (EDSS) is a method of quantifying disability in multiple sclerosis and monitoring changes in the level of disability over time. There are of course multiple things doctors take into consideration, but in my experience the MRI is lauded as the gold standard. It just doesn’t hold true for me.
Is the perfect equation occasional blood tests + EDSS monitoring + routine MRIs + lived experience? I don’t know. But the MRI, to me, is not an incredibly useful tool. I do them but I fear and care far less about the results than I did in the beginning.
My two cents
I’m only one patient but I take great comfort when doctors show their humanity. I connect on a deeper level when they frame information in what they know and what my results mean within the larger picture of what they don’t know. It also bears repeating, everything needs to be shared with my lived experience in mind. I am the expert in my disease progression, I don’t get a day off from MS. With all we still don’t know, I also want to know what they think, what they feel, what they’re trying to do. Is there current ongoing research? Is there a study or a drug in development looking to tackle the knowledge gaps? I want both an accurate and clear picture of current status as well as what we’re working towards in the future, together.
I can’t stress enough the importance of honest conversations with your care team. They are not supposed to read minds. Tell them how you feel. I am a hot mess in appointments because why waste precious energy trying to be OK or fine? The stakes are high and therefore my emotions and emotional reactivity and volatility are heightened. Ask questions. Tell them how you feel.
I’ll take the stable MRI knowing it’s one chapter, not the whole story in my narrative. We are learning how to do this together.
3 responses to “Am I stable?”
I’ve been spending a little extra time this morning reading your blog and responding with prayers. Living with unknowns and tentatives sounds like a brutal reality and I am so sorry that it’s happening to you. I am praying that you will have the stamina to persevere and that some clarity will come sooner rather than later, and it will lighten your heart and mind.
Hello Carolyn–I’m so sorry to read about what you’re going through and wanted to share something that may be useful to you. I was diagnosed with Alzheimer’s subtype 3 at age 32 and my doctor had me look into Dr. Dayan Goodenowe and his research into plasmalogens and their impact on different neurological conditions (MS, Parkinson’s, demenia, autism, etc.). I’ve been taking the Prodrome Sciences plasmalogen supplement (the kind used in the promising studies) for two years now and have noticed improvements in my cognition (though have not yet re-run the NeuroQuant MRI to verify physiological changes). Dr. Goodenowe has many free lecture videos online explaining the origin (naturally occurring in the body until 30s/40s), mechanisms of action, and the results of his research. It may be something you could look into or share with your doctors. Wishing you all the best. 💕
Amazing Carolyn. I haven’t been getting your blogs for some time and have no idea why. Today I decided to go into the website and see what I could find. I’m so sorry that you are experiencing these rough spots. You definitely know your body better than anyone and maybe even better than what some of the test results profess. I wish I could fix it for you or give you some encouragement that could make a difference. What I can say it that I think you are AMAZING. You wake up each morning and meet things head on which is more than a mere challenge. You are consciously involved and extremely proactive which I think puts you way ahead of many other people in similar circumstances. I have the advantage of seeing you as an outsider looking in and I think you should give yourself big hugs and huge kudos. It’s just that you have to live the big picture one day at a time. I get to visit your progress periodically and I don’t think it’s all measured by stats. Your acceptance and the way you handle it continues to grow and grow. You have my vote and my support from far away. Tonite I will pray about how much I appreciate knowing you.