‘Some people just have to learn to live with numbness.’ I lost feeling in my face. I thought I was dying.’: Woman with Multiple Sclerosis becomes advocate, ‘Your life is changing, not ending’

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“5 and a half years ago, my life changed when I was diagnosed with relapsing-remitting multiple sclerosis. I had been experiencing a lot of weird symptoms going on in my body for many years before my diagnosis, some as early as 13 years old. Unfortunately, a lot of the symptoms were easy to be misdiagnosed as other, more common conditions. My bowel dysfunction symptoms were diagnosed as irritable bowel syndrome. The multiple ultrasound scans I had, to search for a reason for my reoccurring urinary tract infections, showed nothing. Having poor eyesight and needing glasses is another symptom, but it is something so common, of course, no one would put that down to MS!

Courtesy of Aliie Harpham

In 2014, I was working as a veterinary nurse assistant when I began getting nausea and upper abdominal pain. I was diagnosed with gallstones and had surgery soon after to remove my gallbladder. A few months after I had recovered, I started to experience severe chest pains. It felt like my rib cage was being crushed, and as if I had forgotten how to breathe. I went to visit my GP at the time, who told me, ‘It sounds like panic attacks.’ As someone who has experienced these in the past, I knew this wasn’t the same, but she was insistent that was all it was.

Courtesy of Aliie Harpham

Another month went by and I lost the feeling on the left side of my face. I noticed this because I was drawing my eyeliner across my eye, and realized I couldn’t feel anything. I kept cutting myself shaving on my left leg, but couldn’t feel it. Then my little finger and all down the outside of my arm towards my elbow turned numb. I went back to the same GP, who told me, ‘Some people just have to learn to live with numbness in their body.’ When I said I felt it should be investigated, she replied with, ‘I don’t know, I’m just trying to say something that will make you happy.’ I didn’t go back to see her ever again.

Courtesy of Aliie Harpham

The next time I had chest pains was at my new job as a student veterinary nurse, I was gasping for breath and crying hysterically. My mum drove me straight to the ER for emergency treatment. Upon arrival, I was taken through to major admissions and treated on the assumption I was having a heart attack. It was at that moment I really realized how serious what I was experiencing could be. After an ECG and X-ray confirmed no issues with my heart, a neurologist was sent to check me over. He did a full neurological exam, and I was surprised to find I struggled with most of it. I told him about my numbness and the GP who wouldn’t believe me. He listened to me and hand wrote a letter for me to give to a GP requesting they refer me for an MRI scan of my brain and spinal cord. I will never forget that man. If it wasn’t for him, I dread to think how much worse things could have got.

Courtesy of Aliie Harpham

A few weeks later, I had an MRI scan and a full blood profile. I had become so used to all the doctors in my life telling me nothing was wrong, I assumed it would be the same answer for the MRI scan. I was so sure, in fact, I went to the scan results alone. When the neurologist called me in and a nurse was there with a box of tissues … I realized it wasn’t going to be the same this time.

Courtesy of Aliie Harpham

The neurologist sat me down and said, ‘The MRI showed multiple active lesions on your brain and spinal cord, consistent with a diagnosis of multiple sclerosis.’ Going from my clinical history they were able to confirm the type of MS was relapsing-remitting. After the diagnosis, I went through so many different emotions. I would sit and cry in my bedroom at night, but fake a smile all day. On the weekends, I tried to block it all out by going to parties and getting drunk. I thought if I could keep acting like nothing had happened, then I could outrun the diagnosis and it would just disappear. It didn’t take me long to come to the realization not only would that tactic not work, but it would also make me feel pretty sick too!

Courtesy of Aliie Harpham

The amount of stress I was going through caused me to have a relapse, which is very common in newly diagnosed MS patients. I remember waking up feeling like my whole body was grinding to a halt. My arms and legs were so heavy I couldn’t lift them, and I wasn’t able to see properly. I still vividly remember thinking I was dying. It was absolutely terrifying. My parents took me to the hospital, and a lovely doctor spoke with me about my recent diagnosis and my symptoms. After consulting with a neurologist, they concluded I was having a relapse and prescribed me a course of high dose steroids.

The next few days were very scary. I experienced nystagmus (involuntary eye movements) and at some points, I totally lost my vision. I also experienced something called distortion, which is where your limbs do not feel attached to your body. I was laid in bed in total darkness, only getting up to crawl on my hands and knees to use the bathroom. During the second week, although I still felt very strange, I was able to see properly again and I could get up and walkabout. As each week passed, I recovered further but I still, to this day, get the same severe symptoms if I am run down or have an infection.

Courtesy of Aliie Harpham

After my relapse, I had my first appointment with my neurologist, who discussed my options for treatment. The types of treatments in MS are usually referred to as DMD’s or DMT’s, meaning disease-modifying drugs or disease-modifying treatments. I was given the choice of three different DMD’s that suited my type of MS and its level of activity in my brain and spinal cord. It was a really difficult decision. All the drugs come with their own intimidating lists of side effects, with the most effective ones carrying the biggest risks, but also the biggest benefits. After a great deal of research and thought, I chose to go straight for the most effective DMD called Lemtrada (alemtuzumab), which is a type of chemotherapy drug administered at a low dose. My neurologist went through everything with me, and I had to sign several forms to confirm I acknowledged the risks of the treatment.

Courtesy of Aliie Harpham

In February 2016, I was admitted to the medical investigations unit to begin my treatment! A lovely group of nurses were in charge of my care, and they did everything to ensure I was as comfortable as I could be. Lemtrada is administered through an IV drip over several hours. The first round is done over five days, and then the second round is done exactly a year later over 3 days. You are given IV steroids and antihistamines beforehand to reduce the risks of allergic reactions to the drug, and you are closely monitored during and after for any side effects. One day, during year one, I had a reaction, and my throat almost totally closed up, I sounded like Wheezy the penguin from Toy Story! This was quickly fixed by stopping my infusion and giving me more antihistamines. You also develop a hefty rash from the treatment which is pretty unavoidable however mine only lasted a couple of days so I count myself lucky! I was treated as an outpatient so I was able to go home and sleep in my bed at night, which was so nice after the intense days there. Once the treatment was finished, I had 3 weeks off work to rest and to keep out of the way of catching any infections from people as this treatment lowers your immune system.

Courtesy of Aliie Harpham

Over the last 5 and a half years, I’ve learned a huge amount about MS and how to best manage my health. I’ve been able to learn what my triggers are, and I have really learned the value of rest! The treatment I had is not a cure, but it is a brilliant preventative and I have not relapsed since having it. However, I have still experienced new MS symptoms that have started from pre-existing areas of damage in my brain and spinal cord. My main symptoms I have every day are; bladder and bowel dysfunction, nerve pain, tremors, muscle spasms, ataxia, visual disturbances, nausea, chest pain, numbness, and chronic fatigue. Although this is quite the shopping list of problems, it is still better than it would be if I hadn’t gotten the treatment I desperately needed!

Courtesy of Aliie Harpham

Throughout this entire experience, I have been blessed with the most incredible parents who have given me total and unwavering support. They have driven me to doctor’s appointments when I’ve felt too weak to go alone, lost many hours of their lives to the busy ER waiting rooms, and made me feel safe when I have been in some truly scary situations. Their constant love and kindness have brought me back from the brink of depression more times than I care to count and I will always be their biggest fan for that and so many other reasons.

Courtesy of Aliie Harpham

When you go through a big life change like this, you quickly learn who out of your friends are the real ‘keepers!’ There were friends of mine who soon lost interest when I couldn’t come out to the parties or bars every weekend, and although it was a shame to let some people go, I have seen this as a positive. Having chronic fatigue means I plan my time carefully to get the most out of my limited energy, so by cutting the people out of my life who don’t care enough, all I’ve done is make more time for the ones who really matter. The friends I have in my life now are fantastic. They have taken the time to learn about my disability so they understand how to support me, and I love them all dearly. One extra special person is my boyfriend Lee who I met 2 months after my first round of Lemtrada. His kindness and support over the last 3 years have been so amazing, and I feel truly lucky to have found a partner like him to navigate through this world with.

Courtesy of Aliie Harpham

Despite many people thinking my MS would hold me back, I think it has helped me to achieve more than I would have without it. Being diagnosed with MS gave me the kick I needed to get into gear and focus on my goals. It helped to give me direction in my life and truly realize what I wanted to achieve in life. I studied hard and gained the extra qualifications I needed to get into veterinary nursing college. Once in college, I passed all my exams, assignments, and practical assessments while balancing multiple hospital appointments, monthly blood tests, and physical therapies. After taking my practical exams in November 2019, I officially qualified as a registered veterinary nurse in January this year. I have also taken part in campaigning with the UK MS society for fairer benefit assessments and raised money for them this year by doing a sponsored walk. The walk was a huge personal challenge for me as I have a severe pain condition in my right leg that has dramatically limited my ability to walk long distances, and I trained for months to achieve that goal.

Lee Cooper Photography

I think it’s important for people to know your life does not end when you get diagnosed with a disability. There is a huge amount of negativity that surrounds the words disabled and disability, and that needs to change! Our community is full of awesome people, highly trained professionals, skilled artists, talented performers, and compassionate friends, to name but a few. Although I would have never wished this diagnosis on myself, I feel honored to be a part of the disabled community and the friendships I have made will last a lifetime. If you are a newly diagnosed person feeling scared, please know our community always welcomes new members with open arms. Your life is changing, but it is by no means ending.”

Lee Cooper Photography

This story was submitted to Love What Matters by Aliie Harpham from Bournemouth in Dorset, UK. You can follow her story on her InstagramSubmit your own story here, and be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.

Read more about chronic illness:

‘You have lesions in your eye.’ I ran out, crying hysterically. I thought I was going to die.’: Woman with Multiple Sclerosis advocates for invisible illnesses, ‘Be proud of who you are’

‘I felt the right side of my face go numb. ‘I’m sorry, we found some lesions on your brain.’ At just 20 years old, I was in shock.’: Young woman with multiple sclerosis says ‘I have lots of life left to live’

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