“You have MS – Ready-Set-Go!”
My name is Elizabeth, I am 38 years old. I am a wife and mother of two, my son is 9 and my daughter is 4.
During April to May 2019, I started noticing unusual sensations in my body, that would come and go every other day : “cold”, numb feet, a loss of grip in my left hand, burning sensations in my hips, around my ribs, and a feeling of being “off balance” – tripping over my own feet sometimes, other days feeling so weak that I can hardly lift my feet to put my shoes on.
I noticed that I can’t remember things, and even though I tried as hard as I could, I was unable to concentrate during meetings, phone calls, conversations. And I was tired – SO tired! – I thought I was depressed, I could not understand why I could simply not bring myself to work a little harder, organise my thoughts and plan like I always could. I was so irritated with myself, I got angry! I told myself that I was being lazy, a bad wife, a useless mom, and that I needed to snap out of it.
Upon my first visit to a GP in May 2019, to report the weird tingles in my limbs, I was referred to an orthopaedic surgeon who put it down to carpal tunnel syndrome in my hand, and scheduled me for an operation within that same week. A day before the surgery, I chickened out – fortunately!
The GP had every possible blood/urine test done for me, but I was textbook healthy and normal in every way. I could not understand it - I believed that I was going crazy! I told myself (and the GP probably thought it too) – that I was just being a hypochondriac – complaining about loss of sensation, loss of strength, and pains in my body, which nobody else could see.
Then, between 19 -22 July, things started falling apart, literally overnight. I woke up on the Friday morning, still able to walk (with some discoordination), and was driving to the shop. By the same evening, I had lost control of my lower body, unable to push myself up from a chair into a standing position – unable to move my feet forward. My legs felt like dead tree trunks. I had lost control of my bladder too! My legs were doing involuntary jerks and I experienced muscle spasms at night. By the Sunday, I noticed a slurring of words, my left arm weak and my right arm shaking, unable to bring a spoon to my mouth.
I was clinging onto the wall, the furniture, a person, or I would fall flat on my face. I went back to the GP on the Monday, where I was offered a wheelchair. After him uttering some scary words like Brain Damage, Motor-Neuron Disease, Paralysis, Slipped Disks, the GP sent me home with the promise that he would call back with an appointment to see a Neurologist.
With no news from the GP 24 hours later, I panicked – I was now unable to swing my own legs out of bed, I had wet myself twice in one night (so embarrassing!), trying to make the 5 meters from my bed to the bathroom. On the Tuesday morning, a dear friend decided to take action. She fetched me at home, practically dragged me to the car, and drove me to the hospital ER.
Was I lucky, or was it fate, but Dr Malan, neuro-surgeon, was able to examine me. He immediately admitted me to hospital, and within 4 hours I was whisked off to my first MRI scan.
By early evening I was told the good news and the bad news. The MRI showed various different spots of ‘damage’, but no signs of any tumours or cancer. A lumbar punch, EEG and electric pulse tests were done to rule out any other diseases and confirmed the diagnoses. By the Friday evening, I received a confirmed diagnosis: “You have Multiple Sclerosis”.
I remained in hospital for 6 days during which I was given cortisone IV to bring down the inflammation in my body, and was assigned a physiotherapist to help me stand and walk again. I then was transferred to a sub-acute hospital for another 15 days, where I received dedicated physiotherapy and occupational therapy, to exercise my muscles and coordination, learning to walk and use my hands correctly.
The more I learn about MS and meet other people on their MS journey, the more I realise how lucky (is that the right word?) I am.
Other MS warriors have endured years of uncertainty, anxiety, doubt and aggravated symptoms, before they were given a clear answer.
Within 2 days of having my major relapse, I was hospitalised, had an MRI and lumbar puncture done and received a complete and undeniable diagnosis, was booked into 2 weeks of physio rehab, and had my first disease-modifying meds prescription approved by my medical aid.
I am so grateful to my Lord and Saviour, and the love of my family and friends, who have supported me from day one.
I am grateful to the hands-on doctors and experts, who took my situation seriously, who immediately took the right course of action, and made my MS journey as drama-free as I could hope for.
I am grateful to an employer and colleagues who were kind, supportive and lenient throughout my ordeal, who are able to accommodate me working from home, and still offered me a reliable income.
I believe that this early medical intervention may offer me a continued quality of life. I have done research on anti-inflammatory diets and I am maintaining my health and fitness to my best ability.
It could have been so much worse – but I consider myself a lucky case. I can walk, work, and still be an involved mommy to my children.
I am OK!
Fast forward to my 1-year anniversary since being diagnosed.
Unfortunately, I have had another 3 major relapses in March, May and June 2020.
My chronic medication has now been changed from Rebif, to Tuvigin.
Every time I had a relapse, my MRI showed new lesions in my spine or brain.
Every time I had a relapse, I was hospitalised to undergo a cortisone treatment. I was also offered ongoing physical therapy and psychiatric consultations.
I am still so grateful to be able to regain my walking, talking and movement abilities after every relapse. By God’s Grace and the support of experienced professionals and a loving Tribe of friends and family, I am still doing OK!