I KNEW THERE WAS SOMETHING WRONG BUT DOCTORS KEPT MISDIAGNOSING ME

Walking along a sunny, cobbled street in Mallorca, eating ice creams alongside my husband and daughter, my phone rang.

It was my GP. ‘The results of your MRI scans are back in,’ she said, ‘and I have to say, Lou, it is looking like MS’.

I stopped in shock. All I could say was, ‘Oh. Oh.’

Then I asked her: ‘And… what exactly is MS?’.

Back at the hotel, I started Googling – and I was terrified. 

MS is incurable. It can affect the brain and spinal cord, causing symptoms that can include problems with balance, sensation, arm and leg movement and vision. I had no idea what my diagnosis meant for me, whether I was going to need a wheelchair, or how I was going to function at all.

I’d always had medical problems. I had issues with my bowel and bladder in my late teens, including recurrent UTIs and horrible constipation issues, and was quickly diagnosed with IBS.

Then, in my late 20s, I started getting tinnitus regularly, along with migraines and bouts of fatigue, and I had what I now know are internal tremors – I’d feel like I was shaking, almost violently, but only from within.

The symptom that concerned me most was severe dizziness and vertigo, which started in my late 20s. It stopped me from functioning; I’d have to lie down for hours, sometimes days, before I could move again.

I made appointment after appointment with doctors but because I was so rarely able to see the same GP more than once, I’d go in with a different symptom each time and I’d have to explain my medical history over and over again. 

It meant no one was looking at my wide-ranging symptoms as a collective. 

Some GPs thought the migraines or tinnitus were behind everything; another suggested I had bad anxiety, which I started to believe myself.

Other doctors thought I might have inner ear issues and I was referred to consultants who thought my crystals (which we all have in our ears to help us detect movement) must have moved.

They suggested I try various maneuvers to correct this – but, of course, these didn’t work. 

These years were frustrating and scary. The severity of my symptoms never stopped niggling at me. ‘This is getting worse, something’s not right,’ I’d think.

Then one day in 2017, I was standing in the centre of Exeter having been out shopping, when the vision started to go in my right eye.

It was as if someone was slowly putting a piece of card over it, until I lost that side of my sight completely.

In a panic, I sat down on the pavement and called my husband. He told me to stay calm, that whatever this was might go away soon by itself.

So I sat there, terrified, for 45 minutes, waiting for my sight to come back.

As people wandered past me, I thought: ‘I know there’s something seriously wrong with me, I just don’t understand what’.

I made an appointment with my GP as soon as I could and was told – yet again – that it was a migraine.

It was only when I queried the possibility of a tumour with yet another doctor that I was finally sent for an MRI brain scan. 

I was formally diagnosed with MS a year later, aged 42. 

The MRI showed that my brain was riddled with lesions, denoting areas of damage. The temporary blindness had actually been a condition called optic neuritis, which is a common symptom of MS.

Part of me was hugely relieved that I finally knew what was wrong – but I was still scared, and this wasn’t helped by the bizarre comments I received from medical professionals.

One GP I saw after my diagnosis confidently told me: ‘You haven’t got MS’.

‘What do you mean?’ I asked. ‘I’ve seen two neurologists.’

‘No, I think they’ve got it wrong,’ he said. ‘You don’t look like you’ve got MS.’

I was shocked and disappointed. But no wonder it had been so difficult to get diagnosed (and I never went back to that GP).

Now, I am being looked after, and it’s so reassuring – there’s always somebody on the end of the phone, including specialist MS nurses. MS nurses are amazing; if I have to leave a message, they always call back and, depending on your issue, they can speak directly to neurologists and refer patients accordingly.

They are very kind and caring, and I feel very lucky to have access to their help in my area. Charities like the MS Trust are also incredibly helpful. You’re not alone.

That’s not to say it’s been easy. Daily symptoms of MS can be hugely unpredictable; one day you might feel OK but the next, you might not be able to get out of bed.

I’ve been watching my bowel decline over the years, which has involved constipation and a decline in sensation (these days, I know my bowel issues are all part and parcel of MS). I have a bowel nurse who helps me, and I can’t go to the toilet without using special apparatus. 

I’ve had quite a lot of pain, tingling and pins and needles. I feel like my foot’s in water a lot – I’m forever thinking my welly’s broken, when I’m actually losing the feeling in my foot.

I’ve been down a dark tunnel, mentally. I’ve felt really unwell, and also very angry because I want to do things, like climb mountains, with my grown-up daughters but it’s not possible because of my fatigue. 

I barely drink now and find it hard to commit to too many social occasions because there is always the worry that on the night I just might not be well enough. 

I’m scared, too, about my future. I don’t think you ever stop being frightened of something like MS. My last two medications, which I took to slow the progression of the disease, haven’t worked for me.

I relapsed, and doctors found new lesions on my brain after another MRI scan. I’m currently taking a break from medication while my healthcare providers work out what’s next.

But even with everything I’ve been through – and am still going through – I know I’m a strong person, and I try to stay positive. I know I’m very lucky: I’m still mobile, and I try to exercise as much as I can, walking my three, gorgeous Labradors.

I find so much pleasure in really simple things – I love the peace and quiet of nature, and being outside brings me so much happiness.

And that’s all I really want, at this point: To be happy, and to enjoy myself as much as I can.

To anyone experiencing unusual, unexplained symptoms, I know how you feel, and it’s so, so important not to give up.

If you’re concerned, keep going back to your GP; and push for any additional tests you think you need.

I didn’t receive the care I needed for a long time. But, now that I am, I’m flipping determined to carry on.

Whatever happens, happens. I can’t stop it; there’s no cure. I’ve just got to live with MS as best I can.

As told to Izzie Price

Do you have a story you’d like to share? Get in touch by emailing [email protected]. 

Share your views in the comments below.

Get your regular dose of need-to-know lifestyle news and features by signing up Metro's The Fix newsletter

2024-06-10T11:18:00Z dg43tfdfdgfd