Today marks 1 year since I was diagnosed with Multiple Sclerosis.
I’ve always had a feeling that, physically, something was not right with me. I spent years going from doctor to doctor, trying all different things. I grew up rather quickly, being larger than most children my age, and had these deep red stretch marks around my stomach area for all of puberty. My doctor at the time thought that I may have an adrenal gland problem, those tests came back normal. They then tested my pituitary function, fine there too. Thus began a cycle of trying to figure out my symptoms, with all the tests and scans coming back normal. At that time, since I was such a large teenager, I was put into football by my father. This is important, since I came to believe that all my symptoms were because of the physical injuries and stresses I sustained during the years I played football. 7 concussions, a dislocated shoulder, 2 slipped discs in my back, damage to the joints in my hands, knees and hips. This was the simplest explanation for all the pain, mental problems, and difficulties I faced in the coming years. My mother was later diagnosed with Hashimoto’s Disease, or Hypothyroidism, in which her thyroid, a gland in your neck responsible for much of the body’s hormone production, simply stopped functioning. Thyroid diseases are mostly hereditary, so I found a new avenue to explore to try and explain my symptoms. Though like all the rest, these tests soon came back normal as well, would continue to be normal for years, and still are today. Again, I reached a point where my symptoms were back to being mysterious, and I just did what I always did and assumed they were the fault of my football history.
Last year, 2024, towards the end of February I began to lose the vision in my right eye. It wasn’t blindness, but as if a fog began moving into my vision, and I could see but not clearly at all despite having prescription glasses by that time. My 20/20 vision had deteriorated to 20/70 in that eye, causing great concern, and yet another “tour de doctors” to try and figure out what was happening. It wasn’t until the end of February, after several visits with doctors that one was concerned enough to just tell me to go to the Emergency Room. This is something I had been trying, and always have tried, to avoid. I have health insurance, but a hospital stay here in the Great Ol US of A is always a hefty bill. Though without many options, and the vision in my eye getting worse every day, I relented and spent the next several hours in a ward of some ED in some hospital answering questions and racking up my charges for any doctor that even looked in my direction. After having been admitted to the hospital and moved from the ED, I got scans and tests, talked to specialists and ate that terrible food. It was my 2nd day in the hospital when the doctor walked in all solemnly. I had seen this scene play out in all kinds of shows and movies, and my stomach sunk. Which, looking back, is a bit surprising to me. I have been passively suicidal for decades, and my time to finally give up and simply die was here, why was I suddenly apprehensive? The doctor said they found lesions on and in my brain during the MRI. Well, it wasn’t exactly the kind of diagnosis I was hoping for, but somehow it was worse. Not only was I in no immediate risk of dying, but I would die a very slow and painful death, losing my faculties as the disease progressed, which as it turns out is my greatest fear. So, lucky me…I guess?
Well, truth be told, spending the next 6 months squaring things away, finding a doctor close by to provide consistent treatment, prescribe medications, and help manage my illness, I found out a few things. Not even a decade ago, MS was indeed a rather bleak diagnosis, just as I imagined it to be. Medications only had roughly a 20% success rate in managing flare up of the illness. Some kind of breakthrough in the 2010’s ended up with a new line of medications that are roughly 92% successful. I’m not that great with math or statistics (Fancy Math) but I do know that is a massive leap in efficacy. So, I started the new line of meds, had more scans done, and some bloodwork to rule out some other diseases that can mimic and be mistaken for MS. Per usual though, my luck with bloodwork seems to be in the negative, as all this bloodwork came back absolutely normal. The main issue with these new medications though, is their cost. They are generally covered by insurance, but as my American brothers and sisters seem to be realizing now, insurance can and will deny you whenever possible, especially if you are deemed “high risk” aka have a chronic condition. This medication is given twice a year, or every 6 months, and costs a whopping $90,000 a dose. Meaning if I were to ever lose my insurance, or be denied for any random reason, I would immediately be unable to afford this medication. The meds aren’t exactly saving my life either, just slowing down the progression to me being a vegetable, so not all that important according to some.
The main thing that I got out of all this, is an explanation for these symptoms that have plagued me for a majority of my life. It is almost something like closure, a weight has been lifted. Yes, this is not exactly what I was looking for, and most people would probably be happy if nothing was wrong with them. For me, I was very obviously not healthy, but I had no explanation for as to why. Just a thin veil of, “It’s probably from football”, which was enough I suppose, but I always wanted more, something more clearcut. Well, it’s been a year now, the vision in my eye is not returned to normal, but I would say it has improved since it brought me to the hospital. Though, I seem to be declining, mentally, physically and just overall as a person, a little bit quicker than I anticipated. I do trust my doctors, but at the same time I am wary. I have had enough of doctors looking at me like I am crazy for saying that I have gigantic lapses in my memory. I mean years just missing, people I used to be friends with that I do not remember whatsoever. My brain power is dropping every day, my balance is like I’ve lived my life on a boat and have permanent sea legs, I’ve become clumsy, my tremors have gotten worse, I don’t want to bore you by going into all of my issues. The point here is that I am declining much faster than I was led to believe. Though I don’t know if I can get that point across to my doctors in a way that doesn’t make me look completely insane.
I don’t know any people who also have this disease, at least not personally, so I don’t know if this is a common thing with MS. I imagine that it is a pretty common thing with most diseases to be fair. There are a few things that I’ve learned about myself during this past year though. That I am indeed afraid of death, at least a slow and painful one. I am far too hard on myself for the things that I am unable to do, or don’t do enough. Even though I got my answers, I still feel like I’m missing something. Life is only going to continue to get harder, mentally and physically for me, so I have to begin preparing. It is quite easy to get overwhelmed when someone has both chronic mental and physical illnesses, but I’ve learned that all I can do is take things one step at a time. Yes, there are things that require more urgency than others, but I can’t do that anymore. It limits what I can and cannot do, but at the same time, I just keep plugging along. Do what I can, when I can, and try not to get upset with myself when I fall behind. If what they tell me is true, I can expect to live another 30-50 years, and that is terrifying to me in so many ways. There are fires I have to put out, ones I have to start, and others that need tending, but I will get there when I get there, I have no other choice. Adapting to one’s current situation is usually far more productive than obsessing over the past or future. Do what you can today, hope that tomorrow is easier because of it, and just keep moving forwards.
High Functioning Hub 
Leave a comment