To be your own best advocate with MS, be your own best expert
Being knowledgeable about your health is crucial
I am not particularly hairy, but even having sparse and fine body hair pulled out by an adhesive is an unpleasant experience.
During trauma training in a U.S. Army Special Forces medic course, we had to take turns pretending to be one another’s casualties, which involved a lot of tape and makeup. It was near Hollywood quality, but removing it afterward was a literal pain, and many of my fellow students elected to shave all their body hair rather than have it yanked out.
My best friend and I thought there had to be a faster (lazier) solution, so we decided to apply a popular hair removal cream from our necks down. I went first, and after stepping out of the shower, discovered that certain areas were more sensitive than others. I immediately looked for something to soothe the discomfort.
We’d been to the beach the week before, and there was a bottle of sunburn relief gel sitting out. So I squirted some in my hand and quickly applied it. If I’d bothered to read the list of ingredients, I would’ve realized that menthol was the main one. While menthol might cool a sunburn, it has the opposite effect on a fresh chemical burn. I won’t go into more detail, but I will say that the experience happened more than 20 years ago and I’ve never forgotten it.
Lessons learned
Believe it or not, I didn’t tell you this story just so that you could have a cheap laugh at my error in judgment. There’s actually a couple lessons about multiple sclerosis (MS) to be learned from that particular experience. It just took me all this time to see them and not be too embarrassed to pass them on.
My friend didn’t have the same bad experience I did, because after witnessing mine, he didn’t repeat it. The obvious lesson, which he apparently knew and I learned and never forgot, is that it’s OK to let someone else try an unproven idea first. You could say that a clinical trial for a new MS treatment is exactly that. Throughout the phases of a trial, the safety, efficacy, and therapeutic level of an intervention are thoroughly tested in patients who volunteered to go first.
Letting someone else go first when you have to deal with the daily issues of MS is tough. I want to be the first patient treated with the cure for MS. For me, that’s a moot point, because my 7.5 score on the Expanded Disability Status Scale makes me ineligible for most trials. Even though I can’t participate in research, I highly encourage everyone with this condition to do so — if you’re able and if you’re comfortable with both the supporting evidence and the risks.
The same lesson should also apply to non-prescription and alternative treatments. There are some great ones out there, but before I try any, I need to see some evidence that what I’m about to try is safe and effective.
I’m as desperate as anyone with an incurable disease, so I have to keep that in mind, along with the knowledge that what works for someone else might not work for me. I would eat dirt if there were enough evidence to back up its effectiveness in MS, but I’d like to see that evidence first.
The other lesson that comes to mind is to look before you leap. In my example above, I could’ve kept an unpleasant experience from turning into an excruciating one if I’d bothered to read the ingredients and warnings on the sunburn relief gel. Before you leap, make sure you read your ingredients and warnings, too. These aren’t printed anywhere on your body, but rather consist of preexisting conditions, other medications that you’re taking, and your overall health.
Being your own best advocate entails a lot of things. One of those should be knowing more about yourself and your own experience with MS than anyone else. Being your own best expert can help keep you safe from bad experiences, or at least allow you to make informed decisions after learning the risks.
If you did get a cheap laugh at my past mistake, don’t feel bad, because any sane person would. My friend, who ended up being the best man at my wedding, was kind enough (or maybe too stunned) to laugh at my predicament until the next day. He did tell me later that he regretted not having recorded my strangled cry of despair and selling it to Hollywood as a replacement for the famous Wilhelm scream.
Note: Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Multiple Sclerosis News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to multiple sclerosis.
About the Author
Jane E. Harmon, OTR, ret.
There are some forms of research, clinical and otherwise, that we can all participate in safely. One is genetic research, where a single vial of blood or a cheek swab is all it takes.
On an expansive scale, any resident of the US can participate in the NIH’s AllofUs Study. They are hoping to enroll at least 1,000,000 participants! The goal is to advance “personalized medicine,” looking towards the day when your healthcare provider will know the best tools to diagnose YOU, then the best ways to treat whatever it is that ails YOU personally. What medicines will help YOUR body or mind heal, and which dosages will work best for you is already partially here: Your DNA, specifically your Cytochrome P450 for example, can determine, how well your body uses various medications. Some patients may need more of a medication; some may need less of it.
The protocol for the AllofUs Study is simple. You make one visit to an office. The researchers will measure your height and weight if possible, take your blood pressure 3 times, and you will donate blood and urine samples. That’s about all there is to that visit.
In return, you will get your own dashboard on the website, where you may well find a variety of questionnaires. You may be asked to participate in any number of interesting ways. If you opt in to the DNA, you’ll learn interesting things, about your propensity to nap or why you dislike cilantro. Of course, all identifying information is stripped from the data shared with scientists around the world who are researching many aspects of personalized medicine. You’ll have the satisfaction of 1., finding a research project that you can participate in, and 2., knowing that your simple little part is literally changing the health of the world by improving medical practice.
The final research you can participate in, and I do mean final, is to donate your brain to an MS research bank. And allow for donation of any other organs and tissues that are allowable at the time of your death.
Benjamin Hofmeister
Hi Jane and thanks for sharing that! I'm in the all of us campaign, the million veterans program through the VA, and submitted DNA while I was still active duty in the army that hopefully got used as part of the large study on the link between EBV and MS. I would encourage everyone with multiple sclerosis to consider submitting samples to one of these programs if they're able so that research has every tool available.