This blog post appears under my URL, remysharp.com and my blog is my digital presence. I got some …"news" recently and I've been wanting to write about it, but it felt odd to do so, somehow. But this is my blog, my digital self, and so this site and it's content are part of my own personal journey.
In writing this it also helps to clear my mind and align some of my thoughts: I was diagnosed with "very mild benign relapsing-remitting multiple sclerosis".
From September through to mid-December I've been seeing a neurologist and having a swath of tests to investigate why I had some tingling in my feet and legs. It really didn't bother me that much, but it was super weird. Tingling legs. I couldn't really run because my feet would feel really weird. I'd seen a GP back in May 2018 and the referral had taken 18 months (which according to a friend who's a GP, is reasonably quick and I know the NHS is under pressure).
I'd originally forgotten about the referral until I was applying for life insurance and they asked if I had any referrals I was waiting on. So now I had to wait for the outcome of this neurology referral…
Seeing the neurologist, I walked in expecting "I can't find anything wrong with you, so we'll dismiss it". I'd seen a neurologist several years earlier and after a thorough tapping of my reflexes, they deemed me perfectly fine (even though I couldn't really feel the tips of my left hand fingers…).
I was half right. He couldn't find anything wrong with me, but he decided to throw all the tests at me, "just in case".
I had full blood work done. This was pretty easy, and I've been known to pass out when taking blood - frustratingly even from a single drop (which is as stupid as it sounds!), but it was fine. Several vials of blood in the post.
Next was the MRI scan. I didn't know ahead of time how long they scan for. I thought it was a 10 minute job. Nope. It was 40 minutes. "Don't move, not even your toes - keep completely still". Thankfully the process wasn't anywhere near as claustrophobic as TV would make me think. I had a visor put down in front of my face with a small letterbox sized window to a tilted mirror that gave me a full view out the end of the MRI machine and into the room. I actually fell asleep in the end - the loud noises actually drowned out my tinnitus which was nice.
Then the last set of tests were electro physiological (EP) tests. This was mostly attaching electrodes to my head and measuring response times from flashes to my eyes. The best bit was when they ran a hairline thick wire across my eyeballs and asked me to keep my eyes open as a screen flashed black and white boxes at me. The wire wasn't uncomfortable but my eyes were definitely streaming and struggling to stay open - definitely some kind of Clockwork Orange moment going on.
I received a letter in the post last week telling me that my brain scan was normal and a few other bits that didn't make much sense to me. But I had my face to face appointment with the neurologist on the Thursday so I'd ask him then for a bit more of an explanation, but it seems that things were normal-ish with some mention of "latency" and "SSEPs"…whatever that meant.
The day of the appointment
So I finally see the neurologist to get my diagnosis of "meh, we don't really know, he's fine though", but instead I left with MS. Multiple sclerosis. Though (thankfully) a "mild form" of MS. A mild form of relapsing remitting MS. I read this week: "Once diagnosed, MS stays with you for life" - it's almost like I somehow picked it up in the clinic 🤣
The neurologist also explained that I could start medication now or I could start later and I'll be returning for a checkup/review in 3 months. I'm also going to be contacted by the Brighton based MS support nurses to help answer any questions I have - so it's reassuring that there's some structure in place.
I did wonder if there's any way that the diagnosis is wrong. I do still wonder that. On the plus side (for my current health), there were no lesion on my brain or spine, but it was the latency in my eye and signals to my left side that has the neurologist settling on the diagnosis.
But, it's definitely weird. Not the diagnosis so much, but that I was just my regular slightly dented human one day and the next I was a regular slightly dented human with MS.
I definitely had mis-preconceptions of what MS was (even though I have a good friend who has MS and they didn't fit my preconceptions at all). In the days following the diagnosis I've been doing quite a lot of reading around the topic - and the content on mssociety.org.uk is (I think) extremely high quality (this pdf was of particular help - if the link doesn't work, it's "What is MS (booklet)" on the About MS page).
It's in my head (now)
In some ways I feel like a fake that's turned up to the MS community party. With my "mild form" and my body being in exactly the same state it was the day before the diagnosis - nothing feels different. Though, logically and obviously nothing is different. Now that I think back over the last 12 months there's things that have happened that can nicely be attributed to MS - like the time I experienced random dizziness where I thought I was going to fall over from a standing position.
My main symptom was/is the "fuzzyness" in my feet. It would be officially described as pins and needles, but to me it felt like the bubbles that stick to the edge of a soft drink bottle, and when you tap the bottle, the bubbles rise up. That's exactly how my feet and legs felt, like there were bubbles in my blood rushing to the surface when there's any impact. It's certainly uncomfortable, but more in an annoying way.
The situation right now is that the previous relapses didn't affect my day-to-day life: I still worked, I still travelled, I still worked out, I still functioned. If I can expect similar relapses a few times a year for the rest of my life things should be fine. I mean, fuck, MS can take a ticket after depression and tinnitus - neither of which I have a "real" diagnosis for. They're all crappy. They're all a grind away at life, but they don't severely impact me and, in spite of those things, I do still have my health - even if I moan a lot in real life (sorry Julie!).
I'd given some thought about whether I wanted to write about this. Writing helps me. I was…I am worried that I didn't want my kids knowing, or even my parents. I don't want my parents to worry about me. I don't want my kids to worry - though I think they're stronger in some way and take more in their easy strides (I've since told my family, and I'll explain to the kids if and when the need arises).
The diagnosis has definitely caused me some mental anguish and if I'm honest, confusion about who or what I am. I keep flipping between "I'm fine, nothing's changed" to "but now I have MS". I know the former is right.