I have multiple sclerosis. I was diagnosed with it more than five years ago, and probably had active multiple sclerosis for years prior to that. I’m unsure as far as how many years specifically. I haven’t written about this before because I wasn’t sure how to approach it and I didn’t know what it meant for me, and it leaves me fatigued and depressed - which sometimes feel similar to me.

The cause of multiple sclerosis is currently unknown. Research suggests that there is a strong genetic component, as it shows up in certain populations more often than others. As it is a autoimmune disorder, it is more common in women, like most autoimmune disorders, such as Celiac, Sjögren’s, lupus, and Rheumatoid arthritis. Radiolab has an excellent episode about how the mammalian evolution, the placenta, and, specifically, the X chromosome lay the ground work for this to happen. The path to being diagnosed with multiple sclerosis was delayed by me being male, as doctors are less likely to suspect a autoimmune disorder for the symptoms that I was presenting at the time.

Another contributor is that medicine, anywhere in the world, has not been able to find a single person with multiple sclerosis that has tested negative for the Epstein-Barr virus. See the recent article by Farah Wahbeh and Joseph J. Sabatino, Epstein-Barr Virus in Multiple Sclerosis, Past, Present, and Future. As I had mono at the end of my second year in high school, that checks that box for me. Thanks to the firehose of funding for mRNA based vaccine strategies from governments in response to the ongoing COVID-19 pandemic, plenty of other diseases have now better chances of seeing vaccines come into existence. Fortunately, medicine has also come up with therapeutic vaccines that address people who already have the biological target that the vaccine is to address. Provenge was approved by the FDA in 2010 as the first therapeutic vaccine.

To the best of my ability to research, it appears that the first therapeutic vaccine developed to address EPV in regards to MS came from work at the University of Edinburgh. Presently, Moderna is running parallel trials in the United States. Although I’m interested in participating in those medical trials, unfortunately, I’ve my diagnosis is not recent enough to qualify. Hopefully this makes a big difference for people with multiple sclerosis and I’ll be able to receive this treatment at some point in the years to come. I’d certainly recommend that when it is generally available that everyone receive it. Although EPV infection doesn’t mean that someone is going to certainly develop multiple sclerosis, EPV can cause a host of other problems. Some as strangely specific as becoming significantly allergic to mosquito bites.

Twice a year, I receive an infusion of Ocrevus (Ocrelizumab), which is about six hours sitting hooked up to an IV line, after which I’ll feel extra tired for awhile, and then usually experience some insomnia. The Ocrevus does increase my likelihood of developing a cancer and certainly increased the possibility that I’ll contract a regular infection (finding out that I have MS, its treatment, and that treatment’s cost on my body during the first couple years of COVID was not a terrific thing for my mental health). Those two infusions are then billed to my insurance for about a quarter of a million dollars a year. As the United States does not dignify its citizenry with healthcare as all other rich countries do, that also means that I must continue to work a full time job to maintain healthcare so that this disease does not progress at its otherwise natural rate and doom me to a rather undesirable end of my life.

Thanksfully, the multiple sclerosis’s effect on fine or gross motor controls is currently mild. The two largest areas of problems for me are sensitivity to heat (Uhthoff’s phenomenon), which limits my ability to be outside in hot months, and, fatigue/depression. I combine fatigue and depression because they seem to be part and parcel for me, and despite being aware of these coming from multiple sclerosis, I still have a difficult time distinguishing between the two when I’m experiencing them. The fatigue does make employment difficult. As someone with an invisible disability, my crutches are chemical. Thanks to caffeine (which insurance does not cover) and modafinil (no luck with insurance here as the FDA has not approved it for the treatment of multiple sclerosis based fatigue, therefore the for-profit insurance companies have no obligation to cover it for me) allow me to get through a work day. However, stimulants are a balancing act for me. Too much will cause problems along the way to solving others. As a note, CVS’s retail price of modafinil for 30 100mg pills is around $1100. Thanks to a “discount card” it gets it down to about $25. As capitalism will not sell me those pills at a loss, I’m not sure where CVS is getting the remainder of that thousand dollars, or if the markup on the pills is just that high. As a further note, modafinil, like most pharmecuticals, are sold at the highest cost in the world here in the United States.

As a part of intentional self improvement physically, mentally, and emotionally, I’m intending to post here with more frequency than I have in the past few years. A diminishment in cannabis consumption (I was told that it can help with MS symptoms, but I think I went too far into a good thing for too long) and alcohol consumption (it doesn’t really help with anything), plus a fairly recent job change that improved mental health and stress levels, and a recent re-committment to physical activity - I’m at the beginning of a new chapter.