my DIAGNOSIS story

In September 2018 I had my first baby, a little boy we named Maximus. I immediately fell in love and all the things I had worried about before he was born vanished. Everything felt so right and so easy. I experienced the expected things like postpartum depression and terrible troubles with breastfeeding but despite the random tears and breakdowns, and the incredible pain and guilt trying to feed my baby boy, I felt so happy. But 3 months later things changed.

Around Christmas that year, I can’t really remember the date but who can in those first few months of a newborn, I started to stumble. I was walking around the house bumping into the walls and tripping down the hallway. I felt like I was drunk. My vision was blurred, I had to work really hard to focus on anything and walking in a somewhat straight line was an incredible effort. In addition, my right ear was ringing, loudly, and I couldn’t hear what people were saying when they were on that side of me. I had lost hearing in my ear.

I was unsettled, but sure it would go away. I seemed to only feel stable if I lay down which essentially rendered me useless, but I was sure it was temporary. I was terrified of lifting my son or trying to carry him anywhere for fear of dropping him. My partner, David, had to stay nearby as I needed help to steady myself. I couldn’t stand in the shower, I had to sit on the floor and wash myself lest I fell over.

I struggled to do anything, to contribute to my family, but I was sure this wasn’t permanent.

After a couple of days and no improvement David pushed me to go to see the doctor. I was sure they would tell me it was vertigo and that it would right itself with time. I didn’t see the point in going for something as simple as that and felt like I would be wasting the doctors time when they would tell me to wait it out and it would right itself. The scary thing is that my symptoms did go away after a few weeks and if I hadn’t gone to the doctor I could have continued undiagnosed, assuming it was simply vertigo; a common occurrence for people with MS.

David and Maximus came with me, I lent on David a lot to get there without falling over. The doctor ran through a bunch of basic neurological tests, asking me to walk in a straight line, close my eyes and stand on one leg, and the testing came up with no real abnormalities – despite my dizziness and instability I still presented at these tests as normal. The doctor asked about a history of MS in my family. I don’t remember him asking this question, but David does. I said no, no-one in my family has it, and the conversation moved on. In the end he gave me a referral for a physio to get treatment for vertigo. We spoke about getting an MRI and he said it was up to me, that they were really expensive and that I didn’t have to get one. I decided to get one, and to get one as soon as I could. I have had a lot of head injuries through misadventure in my youth and if anything I wanted to get a benchmark for any future complications that may have related to that history of injuries. I wasn’t going there thinking that anything would come of the scans, I hadn’t even registered that MS was considered.

During my diagnosis journey, MS wasn’t even on my radar as an explanation for my symptoms.

I organised the MRI for that week, and in the mean time tried to organise my referral to the physio. A few days after the MRI I got a call from the doctors surgery asking me to come in that day. The receptionist said nothing was wrong and not to worry but that the doctor wanted to see me. I knew she was wrong, doctors don’t ask to see you unless something IS wrong. I went there alone. I stumbled like a drunk across the streets finding every pedestrian crossing to get there safely, my mind racing wondering what the result of that MRI could have been. I thought maybe it was a brain infection, something that was treatable and curable; multiple sclerosis didn’t even enter my mind.

I walked into the doctors office and sat down. She closed the door, sat down and shuffled some papers.

It looks like you have MS.”

I nodded.

I didn’t ask what’s MS? I just sat and listened. She wrote me a referral for a neurologist, organised some blood tests, ran the suite of neurological exams that the first doctor had done that again didn’t show anything abnormal.

I didn’t really remember what was said. I walked out in a daze, a dizzy daze at that, but no real emotion. I remembered the MS read-a-thon from primary school but I didn’t remember what it stood for. I remembered a moment in Ricky Gervais’ stand up comedy routine about MS, the “crippling, wasting disease”, but I still couldn’t think what it was.

I had to get another MRI for both my brain and spine, and I needed a lumbar puncture and more blood tests. These were harder to cope with as the potential diagnosis hung over my head. It was going to be a couple of weeks before the neurologist would give me a somewhat definitive diagnosis and follow up appointment and so I turned to my medical friends. They confirmed that my MRI results were suggestive of MS, but the wait to find out for sure from the neurologist was hard. I wanted to know, I wanted an answer. My way of coping with uncertainty is to focus on what I can control and if I was going to have a future with an unpredictable and uncontrollable disease like MS, I needed to know so I could figure out what I could control and focus on that.

I remember I spent many moments soaking in this baby boy and thinking how unfair it was that my future with him felt like it was being taken away.

Once my diagnosis was confirmed, I had my moments of why me? this is unfair. My mind raced to the worst case scenario, that I wouldn’t live to see my son have a family, that I wouldn’t be able to be the active and engaged mum I had pictured myself being, that I wouldn’t be able to contribute to my family anymore, I would lose my job as my brain stopped working, and my health as my body stopped working. I feared I would become an unwanted burden on their lives, hindering them rather than helping them. These thoughts are to be expected, they are a reasonable reaction to this kind of news and predictable. But it’s what we do with these thoughts that matters. Surprisingly quickly I came to a point where I accepted my diagnosis, that this was a part of my life now but not the defining part of my life. I can’t stop myself from having MS, so I need to accept it and start looking at what I can control. I started thinking that actually I’m the right person for this to happen to; I have the ability to look into the research and find information that others can’t and am able to communicate that information; I’m fit and healthy and am dedicated to my health so will make the appropriate changes for a long and healthy future; I have a positive attitude, the right attitude to handle the uncertainty that comes with MS.

At the end of the day, I have been diagnosed with multiple sclerosis. There is no cure, but there are things I can do to help manage my disease. I am thankful to David for pushing me to see the doctor, or my MS may have been missed. I am glad that I went to get the MRI even though the doctor thought it was vertigo, or my MS may have been missed. I’m happy that my MS was diagnosed early, that I can make the changes now that can help me stay functional and fulfilled for my future. I’m glad that I can do this with a positive attitude and a sense of humour; with those two things you can get anywhere.

What’s your diagnosis story? Are you still in the process of being diagnosed? Leave a comment or get in touch and share your story with me.

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