How Will I Look Back on My Medical Decisions?

By Matt Allen G

4 min read

Hindsight is 20/20. Surely, at some point in your life, you've made some kind of mistake that, in the moment, seemed like a good idea. Before doing whatever it is that you did, you weighed all the possible outcomes of the decision you were about to make, and based on all the information you had at the time? It seemed like a great idea. But then, somewhere down the line, you realized that you had actually made a huge mistake. You realized this because you had since come into possession of new knowledge regarding that choice you made some time ago. There is absolutely no way you could have known what you know now back when you made what you would later regard as an absolute blunder, but still, you just hate yourself for it. Hindsight is 20/20 though, right?

Regretting health-related decisions

I worry about this when it comes to my life with multiple sclerosis (MS). I've only had MS for just under ten years now, but already I can think of several health-related decisions that I've made in the past that I now regret even though at the time? Knowing what I knew? Those choices made total sense and seemed like the best option. But now? Now that I've lived through some of the consequences of those choices? Well... if I could only go back in time... but... yeah. So instead, I can only wonder, "What would my life with MS be like now if I had done things differently?" or, more importantly, "In ten years, what will I wish I had done differently?"

Small choices change the course of our future

Of course, the decisions we have to make in our everyday lives can seem like pretty small and insignificant ones right now. Sleep in or go for a walk? Work out or watch TV? Eat a healthy meal or order takeout? Our future life with MS will be the sum of all those little choices. Choices that, when looking back on someday, probably won't seem so "small." Choices that can also involve some pretty significant decision-making, like what treatments you decide to try to manage your MS with. In the early years of my life with MS, Tysabri (natalizumab) seemed terrifying to me, but now I only wish I had started it sooner. Maybe if I had, my level of disability would be much lower? I'll never know, but I'll always wonder.

(Really quick, I don't mean to make it sound like making "better decisions" is ever easy or even within our control.)

Every decision is a seed planted

Every choice that we make is like planting a seed; we're probably not going to see anything come of it tomorrow or even in a week, but what about in a year? A decade? Eventually, in time, that little seed that you planted will become a huge tree. Changing your diet might not change how you feel in a day, week, or even a month, but maybe in a year, you'll notice a difference? Maybe in five or ten years, you'll be much better off than if you hadn't? All the little choices we make right now regarding our health could have a huge impact on where we'll be in regards to our MS in 10 years.

Foresight suffers from optic neuritis

Will I wish that I had taken diet and exercise more seriously? Will I wish that I had changed doctors? Signed up for clinical trials? Experimented with more alternative therapies? Will I look back on the choices I'm making now and wish I had done things differently? Hindsight may be 20/20, but foresight seems to suffer from a minor case of optic neuritis.

Looking back with gratitude instead of regret

I have no idea if what I'm doing to fight my MS today will be something I look back on and wish I could travel back in time to change. I can only do what I think is best based on the information available to me today, and I hate knowing that I'll almost certainly look back and think, "Oh well, hindsight is 20/20." My hope though, is that more often than not, I'll look back and think to myself, "I'm so glad I did what I did and started doing what I started doing."

Do you find yourself looking back?

I know that a lot of this is easier said than done. It's not as simple as going to the gym or staying home to watch a movie. Obviously, things that are out of our control (like how we feel on any given day or even our financial situation) have a huge impact on the choices we make about our health, but my point remains the same: even though I feel like I'm doing my best now, will I later look back on it and think I could have done things differently? Do you find yourself looking back on your past MS-related decisions with regret? Do you worry about what you'll think in the future about what you're doing now regarding your health? Or does it not at all bother you? Share your thoughts in the comments below!

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mseverchanging Member
Matt, A great article! Yes, On some I look back and say .. "That was the best decision I've ever made". Relating to not having surgery, but a year later finding That I was not a candidate, due to osteoporosis, and a rare blood cancer caused by the H63d genes causing hereditary Hemochromatosis. (Outside link) <a href='https://Everchangingms.blogspot.com' target='_blank' rel='noopener noreferrer ugc'>Everchangingms.blogspot.com</a> But knowing that injection spots are becoming scarce for copaxone, New changes, and all aspects need to be looked at for the Quality of life. JoeY
1. Matt Allen G Moderator & Contributor
 Yes, it definitely works both ways. I'm glad I made certain decisions even if I regret making others (despite the fact that at the time, it was probably the best I could have done based on what I knew)/
f5hwo4 Member
I haven't regretted any of my past decisions, there is no predicting the path your MS is going to take. I had two aunts (sisters) that had MS, the only treatment when they had it was Steroids and the Swank diet. My younger aunt was in assisted living by the time she was 30 and died of brain shrinkage at 50. My other aunt had problems with one leg and foot drop. She died at 75 just using a cane to get around. She died of a blood disease not MS. Look forward not back. Potter
1. Matt Allen G Moderator & Contributor
 Well, I always try to look forward, that's the direction of life. Looking back changes nothing EXCEPT, possibly, how you'll choose to make FUTURE decisions based on the results of past ones. My past with MS has definitely changed how I make health decitions today and if I never looked back, I would never have learned from my mistakes. Knowing what I know now, I would have approached my treatment very differently and based on what has happened to me and current research, I PROBABLY would be in a much different place today. I say probably ONLY because I know we can't predict the future and anything is possible. Maybe what I should have tried to focus more on in this post was about how the medical choices I regret have taught me to do things differently.
freedomfighter Member
Dear Matt, Thank you so much for raising this question and writing this blog. I hope this response is helpful to anyone who reads it and needs it. The only thing I regret is having all the information I could get my hands on through help of my medically educated family, about the second round of IV’s on the only treatment left in my case according to my doctors. And discussing it with my neurologists and not standing my ground when I knew in my gut this wasn’t the right treatment for me. I explained them all the risks I found in the scientifically based research and all the evidence I gathered from many related articles which had been already published and proven reliable insights at that point. The first course had given me such a huge allergic response I slipped into unconsciousness every day after finishing the infusions, hours longer each day up to 13 hrs at day three, waking up blind and then slowly regaining vision in the next hours, without anyone understanding why this happened and what caused it. I should have stopped it right then and there but I was to sick at the time to even feed myself. All they could do was up the dosage of anti-histamine IV’s and not only start the day with them but end with them as well after the treatment IV’s combined with a high dosage of additional prednisone IV’s. They figured it to be a heavy allergic response and tried to prevent shock, I was told later. I was on heavy double dosage anti-histamine meds for over six months after that because the rashes kept breaking through. So there was a lot of reason for concern based on that experience alone, it should have been evidence enough. I had been proven highly allergic to another treatment described in your story before this happened only months before so they had to cancel that one as well only weeks prior. This was my third treatment plan within months of being hospitalized after I started getting sick a few weeks after having been given shots for international travel for work. These months had been so debilitating at a very high rate (in a wheelchair after six weeks, paralyzed both legs from the waist down, paralyzed arms, hands, speak, swallow, breathing etc) they were worried nothing was strong enough to reverse the autoimmune process. My body was in full war-mode against itself at that point. The year that passed, things got worse and never better, there was no other possibility for treatment due to my completely broken down immune system. I had some time to do the research in-between sleeping about 18 hrs a day. And still, knowing all the facts, reading all the articles, discussing it with well educated professionals, my neurologists told me going forward with the same treatment was my only chance, my only option. I sat there one week before the next phase, listening, consequently doubting myself, my mind, my body, all the research I had done, my family had done. How was I able to discover all this information when my neurologist had done such an extensive study on the matter for years and years and was way way smarter then I ever will be. I decided, even knowing all the facts, that the only way forward was to trust the person who was formally educated on the subject who advised me to move forward. I got the treatment and the first day I got the IV’s, I lost consciousness again, right in the middle of a conversation with friends visiting. When I woke up out of unconsciousness, it was the next morning, I was once again completely blind. This time, up until this very day two years later, my vision has not been restored and appears to be a direct consequence to the treatment. So my body did not respond well to the second round either, in fact even worse then round 1, the illness progressed and still does rapidly without moments of improvement. I legally stopped all medical treatment after that and have it formalized, in case I lose my speech even furthee and won’t be able to communicate anymore at all myself. I simply do not wish to be experimented on any further at this point. Yes, I am still alive, but this is not what I call ‘living’. I know in my heart my neurologists and other doctors did not foresee this, did not anticipate this, did not want this nor did the doctor who initially gave me the shots even though we now know he made a grave medical error in doing that. I guess my point is, even if upfront you know all the facts and you know all the risks, you still have a little space left inside you where hope lives, where you want to take that chance to get better against all odds and hope that fate is on your side. And someone who has the stature, the eloquence, the education, the right words and is full of empathy, can come in and talk to you and you allow them to change your mind at such an emotional moment where it can feel like you have no time to lose and you doubt your own insights. Not just with this disease, but many others as well. You cannot blame yourself for hoping, for trusting your decisions, or for not trusting your own knowledge at a certain point or even for trusting your doctors for that matter. If we stop trusting them, all hope is lost! And we really do need hope to live. We need hope, to evolve and we need hope and a lot of courageous people, to find a cure! The world is not a perfect place nor will it ever be. It’s not black and white. The only way we learn and are given a chance to pay it forward, is by making mistakes and with that, hopefully improving lives of others if not our own. Was this preventable, yes! Of course I wish it wasn’t me that had to carry these unfortunate experiences and living through the demise of my own body, losing the chance to raise my son, losing my freedom, my beloved job, my home, my income, my independence, many friends and even family members. On the other hand, I wouldn’t have wished it on anyone else either, so I’d rather it be me then someone else. Hopefully this disastrous experiment will prevent others from having to live through it and they hopefully will be able to have more choices in their own life, raise their children into adulthood and live a semi-normal live with other treatment plans. In that, I find comfort every day. In that lies my strength to go on from sunrise to sunset, to sunrise once again. We wouldn’t be where we are today if not for others who suffered and taught our doctors before us. The pharmaceutical company that bought the patent and put this treatment on the market under a new name (for the third time). Pricing it about 400 times more expensive then it had been when it actually had been developed with public money by a university research lab decades ago for a different disease. Did so with raving ‘marketing’ reviews for MS benefits, while knowing about these risks years and years before it came to light full force inside my body and that of others. It had been experienced in several clinical trials for this and other types of diseases. We have now learned they are facing class-action suits in the United States because aside from severe disability, patients even died because they kept them and many more additional side-affects a well hidden secret. Preventing doctors to look for or even understand the signs and symptoms were both related and life threatening. Countries around the world that had allowed this treatment initially are either closing down or highly restricting this treatment until further notice. Which has a sad side-effect as well because some patients actually improved and benefited from it. Reality can be harsh on both sides of the coin. No matter the choices you make. All you can do is forgive yourself if you feel you need to and move on, for your own sake. I guess in hindsight I’m one of the lucky ones to still be alive and around to at least hear my son’s voice each day as he now fully takes care of me still being a teenager. I can still tell him I love him daily and be there for him to teach him new recipes, to talk to him when things get rough for him with school or other experiences. I still have some purpose for him. We cannot change the past so look forward to the future and try and live in the now... believe me, I know how hard it is to hear that even even harder to live it, some days.
1. Matt Allen G Moderator & Contributor
 Wow, well said. That all sounds really scary! I think this is a great example of when a second, third, or fourth opinion is warranted!