Hi, I'm Jacob. A lot of people call me Fent/Fenty, I'm 24 and I have relapsing multiple sclerosis.
That's all I can think about a lot of the time; that and I see most of my life through the scope of MS. I'm new to this, you see. I was only diagnosed in January after more than a year of trying to find out what was actually going on with me.
I've never been a stranger to fatigue, due to being diagnosed with chronic fatigue syndrome at 12 years old. On top of that I've had experiences with sciatica causing nerve pain and reduced sensation through my legs and especially feet. It wasn't until I'd developed a tremor in my right hand and a lack of coordination in my my limbs in November 2015 that I had any idea something was wrong. I've always been a drummer for as long as I can remember and at the start of my symptoms fresh off the back of a music degree (contemporary world jazz music, to be exact) with first class honours. Not for much longer. Not in the same way at least. Around this time I met my love, Jessica. She lives 300 miles away but I have a car and since we met online a few months ago we've fallen deeply in love. Throughout all of what's happened through my journey with multiple sclerosis so far, she's been so patient and understanding that even in my fearful attempts to show her how hopeless my future is or whatever feeble thing I've been telling myself, she's stuck by me and shone a light on me that is honestly about the only thing that's kept me hanging on at times. Enough mush for now though, on with the story...
The uncertainty of when or if my tremor and coordination problems were going to return shook my confidence, already having lost a lot of my skills. Since then I've barely played, and I've not written a piece of music since either, being more disenchanted with music than I thought I could ever be. More on this later though.
I opted not to go to have a referral to a neurologist right away, thinking it would just go away. Over the coming months a whole load of other interesting things happened though, including intermittent (and PAINFUL, let me tell you) cramping of all of the muscles on my righthand side, often making me fall to the floor on my side until it passed. The symptom I notice most, though, is the reduced sensation in my feet and up my legs. Having mistaken this for another, very persistent, sciatica flare-up, I was stretching very frequently and noticing no real improvements. Even my chiropractor said she couldn't find a single knot or tight muscle in my back. On July 9th it will be a whole year since I had complete and uninterrupted sensation in my feet. Happy anniversary...
Fast-forwarding to when I finally saw a neurologist in September 2016, he couldn't see much wrong with me and took my symptoms to be an exaggeration of my natural essential tremor, caused by my underlying health (my degree and life events around the time had really worn me out) and said there was a very minimal chance it could be something more sinister and if I wanted, he could run some tests. Yes please!
In November I had an MRI and a blood test done, the results of which were published around Christmas. There was a long wait to actually be told the results by my neurologist, but in the meantime I'd had an appointment with a psychiatrist who had actually seen my MRI results and told me (erroneously) that I probably had Wilson's disease - a super rare disease affecting copper metabolism that can cause neurological symptoms. Great, I thought. I can get treated for that, get this copper out of my brain and be back to my normal self in no time, right? Well, as I found out almost a month later, and I can't stress this enough; hell fucking no. On the plus side, I now have a few minutes of conversation to fill with facts about Wilson's disease if it ever comes up in conversation... which I'm not expecting to happen any time particularly soon...
Anyway, my GP had printed off the radiologist's report on my MRI scan, which didn't have a diagnosis, but described what the images showed. Now, I'm the sort that will research things I don't understand, particularly when it comes to psychology and biology. Doctors probably hate me. Regardless, in amongst the jargon like "T2 weighted" and "FLAIR", whatever they meant, and wherever the areas of the brain were whose names I couldn't remember for you if you wanted me to, I spotted a word I'd never seen before. Demyelination.
D e m y e l i n a t i o n.
That doesn't sound like copper to me, and it doesn't sound like the telltale characteristic sign of copper deposits in the brain á la Wilson's. And google shows no results for "Wilson's disease demyelination" (Remember i said that doctors probably hate me?). Well, googling demyelination tells that the most common demyelinating disease is multiple sclerosis. Right, okay... That thought can stay buried deep then...
And it did. Maybe it was one of the other demyelinating diseases. Maybe it was something easily fixed. Maybe it wasn't that. Maybe it was something. I'd take a medical anomaly, anything, at this point. But in my head I think I knew. I went to the neurologist's office for my followup appointment January 16th 2017, and then this all became a little bit real. And then a lot real. I'd heard of multiple sclerosis. I had no idea what it really was. I has no idea about it at all really except a small amount I'd read the weeks previous. But there are some sentences you expect to never apply to you that all of a sudden do.
"I have multiple sclerosis", I would say out loud, almost with a smirk, trying to tell myself. Trying to make myself believe it. But I couldn't. Not yet. The only real positive I've heard today is that the MRI I'd had in 2014 to check for ear canal obstructions was clear, so it's less than two years I've had this. But still, it's hard to focus on a small victory such as that when, still, "I have multiple sclerosis" isn't a lie anymore.
And so begins the dissociation. And the reading. So much reading, so much information, so many different opinions and 'cures' and fixes and treatments and advice and research and studies. But I'm convinced I'm going to be the first person with this disease that completely beats it. For a few weeks. And here comes a relapse.
I'm not so bulletproof now. I can barely walk without tripping over my feet and my legs are spasming ridiculously. I need help to walk and my left hand is so slow and cramped up. I can barely feel anything from 6 inches above my belly button and my nerves HURT. What luck that I'm meeting my MS specialist consultant neurologist this week though. Some oral steroids (first prize for 'worst taste on earth', congratulations methylprednisolone!) have me sorted out and somewhat bulletproof again, but the reality is starting to set in now. My consultant has given me the names of two treatments to research; Tysabri and Lemtrada. Yay, more reading. Cos I haven't had enough existential crisis by this point.
Next come the lows, lower than many of the lows I've experienced before in what I wouldn't describe as an easy life. Those stories are for a different day, perhaps a different blog, I haven't quite decided yet. Getting to grips with this disease and the uncertainty of every day is an interesting task; rarely a boring one and never an easy one. I feel like I could spend a week or so of solid typing of my negative feelings and setbacks but I won't. Not yet...
Anyway, moving swiftly to the present day. It's June 30th. It's 6:00 in the morning and as usual, I haven't slept. My preordered copy of the PS4 remastered version of the Crash Bandicoot trilogy (a hugely important part of my youth, and in the present day) is set to arrive in a few hours. I'm typing on the laptop I bought to make my five days receiving Lemrada next month more palatable. I now own a trumpet and an acoustic guitar and have about 1/4 of a drum kit set up. I'm somewhat motivated to get back into music; writing, recording, playing and the time away from it all has changed the way I think of myself as a musician. I'm actually getting excited about music again. Jessica and I are still together and every day she gives me inspiration to keep living, and for her and our future together I hold on until the end of the day each day. Sometimes barely but I haven't failed at that yet so that's something to take pride in. Time will tell where else the river will take me; piss knows I had no idea it would take me where I've already been so I've stopped expecting the scenic route by now. Life still feels like a bit like being on an unfamiliar planet, and one I'm not quite fully welcome on at times, but in amongst my fears for the future, both near and far, there's a glimmer of hope.
