There are different types of Multiple Sclerosis and I have the most common type which is Relapsing/Remitting (RRMS). My central nervous system is being randomly attacked by my own body. It is known as an invisible disease because the damage to the central nervous system cannot be seen from the outside & as yet, for me, you cannot tell what my symptoms are or that I even have MS, by simply looking at me.
I didn’t know that I had MS. I never even suspected it because I didn’t really know what MS was (see my Blog – Introduction to MS). My symptoms began back in August 2015 with fatigue. This wasn’t just feeling tired, this was world far beyond. I was totally exhausted even after a full night of uninterrupted sleep. I remember one particular day, I was at work and had been fighting this feeling, trudging through each hour, telling myself I just needed some water or some lunch or an early night (again). I’d stepped outside and for a moment, the world stood still. I could feel the cool wind on my face and the breeze running though my hair as I acknowledged this new, strange feeling of exhaustion, wondering how I even had the energy to take my next breath. Sure, I’d felt tired before, we all have. But I knew that this feeling was different.
Toward the end of that year and throughout January 2016 I had been picking up a series of cold and flu infections, ear infections, tonsillitis one after the other, like a constant rolling punch that I just couldn’t stand up from. Given the time of year, it was easy to dismiss these things with familiar excuses.
“Everyone gets ill at this time of year”.
“it only hits you when you stop”.
But beneath the surface, my body was indicating a weakened immune system. This was followed in the next months by some bladder dysfunction, a new type of urgency and frequency to ‘go’ that I’d never experienced before. Bladder infections and even a kidney infection took over those rolling punches. Just as I thought maybe I could get up again WHAAM, another infection would knock me down.
As the next three months, April, May and June passed, not only did I continue with the bladder dysfunction but also some lower abdominal and back pain with Irritable Bowel Syndrome (IBS) began. Still I justified it all with excuses.
“It’s just because I’m so busy”.
“Maybe I’m not eating right, maybe I’m allergic to something, I’ll try a new ultra-healthy eating plan”.
A chat with my GP led to an appointment with a urologist. Precautionary, just to see what was going on. In all honesty, being unwell was taking its toll on me by this stage. I hadn’t felt good in almost a year.
July 2016 brought with it some serious head pain and I was apparently experiencing migraines. I blamed stress, I blamed my job and what was going on at work at the time. I longed for a few further weeks down the line when things at work would hopefully settle and I’d feel better. It didn’t seem to matter what I did by way of selfcare, none of these symptoms would ease. Until the final explosion mid July 2016, when I was suddenly struck down, knocked off my feet completely with extreme, severe bouts of vertigo, constant nausea, violent vomiting and an ongoing, dizzy imbalance.
I’d woken at 5am, my horror beginning with the room spinning full force around me. I was sick several times but the spinning just wouldn’t let up. I clutched the duvet, the bedposts anything to try and be still and stop the spinning. A call by my husband to ‘111’ secured me a Dr’s appointment straight away. My husband helped to dress me and clutching a bucket, we somehow managed to get to the surgery where I was diagnosed with a condition called ‘Labyrinthitis’ and given some medication. I had never heard of this, although in the days that followed, friends started to reveal having suffered with this themselves. I remember thinking it strange that so many people, this close to me, had endured this pure evil and yet I’d never heard of it! The days went by with no let up, my symptoms worsening, medications not working, daily home visits from my GP and more medication swap-outs. I was completely bedridden, couldn’t manage more than jelly to eat and water to sip at, knowing that it was only a matter of time before it came back. By the ninth day, I was taken into hospital for tests. Immediately, Labyrinthitis was dismissed as the cause and I was told that other scenarios were suspected, which would be confirmed or clarified further by MRI.
After being whizzed through the hospital corridors, swinging doors and elevators, laying down flat in the MRI machine with my head secured in position was simply a recipe for disaster. I think I lasted about 3 minutes before the spinning led me to need to vomit again. I pressed the alarm to get me out of the machine. The nurses ran in and sat me up and, completely drenched in sweat, I threw up again as vertigo attack after attack made me pay for the previous accomplishments. For the rest of that day, my time was spent in exactly the same position in a hospital bed, unable to move a single muscle. I can honestly say that was the absolute worst I have ever felt in my whole life. Spinning and vomiting frequently, unable to do anything for myself, even the slightest movement just invoked more of the same. It was like being on the waltzer ride at the fairground or those spinning teacups for a week and a half and never being able to get off.
As an MRI scan was now out of the question, I was sent for a CT scan instead. A much quicker procedure although not as in-depth. The results came back ‘normal’ and I was eventually released from hospital and handed another incorrect diagnosis, BPPV this time. Suffice to say, my hospital experience was not a good one and for more reasons than one…..but that’s another story for another day.
Pushing into the third week since this hell began and believing my diagnosis, I did everything I could to try and help myself to speed up my recovery, alas, to little avail. I followed my hospital discharge advise and tried to complete my head manoeuvre exercises, but they just made me worse every time. More days completely written off, unable to move. Dizzy. Sick. Dizzy. Vertigo. Sick. Dizzy. Knowing that something just wasn’t right and in desperation I drew upon my private healthcare package from work and requested a second opinion.
Under a private ‘Ear, Nose & Throat’ consultant, 4 weeks later than the first MRI fiasco, there had been a slight improvement and I was able to lay for the duration of another MRI attempt. The results revealed white patches on my brain and I was referred immediately to a Neurologist. Looking back, I probably should’ve felt scared, fear of what a neurologist might tell me. However, I remember feeling completely relieved, reassured that I wasn’t imagining all this. Finally, there was the evidence that ‘something’ was going on and this wasn’t all in my mind. I think, sometimes in life, we get these nagging feelings, a sixth sense almost, and I felt I’d been right to listen to mine.
The vertigo sessions began to fade to just a couple of times per week. A constant light dizziness remained every day, but with the vertigo now slightly at bay, it meant I could eat more and begin to rebuild some strength. However, I noticed that my eyes began to hurt, just by moving them around. Almost like a pulled muscle feeling. They ached and I started to see some grey shadowing at the sides of my vision along with a couple of quick bouts of double vision in the mornings. I decided to get my eyes tested, in case I needed stronger glasses. After checking my eyes thoroughly, the optician told me that she wanted me to take the images and her report to my upcoming appointment with the Neurologist. I did not know it at the time, but the images indicated I was suffering with Optic Neuritis.
My Neurologist was wonderful! She had my MRI results in front of her, blood test results and the optical scans. We went through my entire medical history, her scribbling her notes frantically, particularly the timings of each of these occurrences, before she gave me a physical examination. She put all the evidence and dates together and declared in an almost ‘Eureka’ moment, that she knew what it was. Tentatively retaking my seat at her desk, she softly revealed the diagnosis of Multiple Sclerosis. There were a couple of other tests she wanted me to have along with two further MRI’s, brain and spinal, both with contrast this time, but she felt very sure of the outcome.
The tests took place and one week later I was called back to her office. She explained the white patches that the MRI revealed were indeed lesions, caused by MS. The large one on my brain stem correlated directly with the vertigo, sickness and temperature spikes that I’d experienced. My spinal MRI had also revealed lesions which correlated to the bladder and IBS dysfunctions and my optical images indicated Optic Neuritis, common in MS.
Saturday 8th October 2016. A date I don’t even try to remember, yet it won’t leave me.
Confirmed: Relapsing Remitting Multiple Sclerosis.
One of the most important things to understand about MS, is that no two persons cases are the exactly same.
