The road to diagnosis

A Facebook memory from a year ago this week has reminded me of the journey I’ve been on over the last year.

We went to a family birthday celebration one weekend and Sue’s family asked her if I’d been drinking before coming out because my speech was slurred from the start (how very dare they! 😂). By the end of the evening, during which I had drunk, it was a bit worse (though not intelligible) and Sue thought my face was slightly drooping on one side. She was tempted to take me to A&E but I pointed out that as I’d been drinking they probably wouldn’t take it seriously- and besides, I felt fine.

I had had some symptoms prior to then, I just didn’t know then that they were connected. My breath was a little shallower (as evidenced in my singing, as I’ve written about before), and my legs weren’t right – they felt slightly heavy. I’d noticed at Christmas that I was struggling to stand from being crouched down and my fitness levels were worse than they should be. In the New Year I’d tried starting the Couch to 5K programme again, having successfully completed it in the Autumn. I knew I’d put weight on since and I was obviously wasn’t as fit, but I was taken aback at how much I struggled. Still, I just put it down to getting older and chastised myself for gaining weight. Again. 🙄

Anyway, three mornings after that night out, I got out of bed to get ready for work and promptly blacked out, dropping to the floor. Now, in my entire life I have blacked out/fainted twice before, both times when giving blood, so I am not a blacker-outer. 😁

For Sue, after how I’d been Saturday night, it was non negotiable – she was taking me to A&E.

To cut a long story/hospital wait short, they concluded I had probably had an episode of mini strokes but I was ok.

A week or two later I went for a lunchtime walk at work. My walking felt funny again and then I stumbled for no reason. Alarmed, I rang Sue who told me to come home and ring the doctor, which I did from the car. She told me she thought I was having a stroke and to get myself to the hospital in Merthyr because it has a specialist stroke unit.

To cut another, even longer, story/hospital wait short, they concluded I probably had some kind of progressive neurological condition and referred me to a neurologist. Unfortunately they didn’t mention MND in the referral or I would have been fast-tracked.

We found out that the waiting time for an appointment with the neurologist was a whopping 34 weeks! Luckily my lovely parents came to the rescue and offered to pay for us to go private for the initial consultation. We did some research and found one we liked the sound of. Even then we were looking at a wait of a few weeks but thanks to Sue’s determination and tenacity, we managed to get a cancellation and saw him towards the end of June. He instantly ruled out MS, which we had been hoping for, and referred me for an MRI and nerve conductivity tests. There is no test for MND so they rule everything else out.

I had the MRI at the end of July, then the conductivity tests on 6th August. With these, electrodes were attached to various parts of my body and electric currents sent down them. It wasn’t pleasant! The worst part was the sound – there was this loud static-like noise which increased after each shock. I had them on my arms, legs, neck, face and even my tongue! It was mostly uncomfortable rather than painful though a couple of them did feel like proper shocks and did hurt. I think it was as hard for Sue to witness though.

At the end, the doctor asked if I had any questions so I asked when the results would be sent to my consultant. His response blind-sided us. “I’ll be able to send them within the next few days, but I can confirm it is what you think it is. It is MND.”

We hadn’t expected to find out there and then so obviously it was quite a shock. But we were grateful because it saved us an agonising wait. Overall, I was quite lucky to be diagnosed as quickly as I was – many undergo months or years of strange symptoms and tests for all sorts of things before it’s identified, largely because GPs don’t see many cases so don’t think of it, and everyone presents differently.

Today I learned that my breathing is starting to be affected and I’ll need to start overnight ventilation, which apparently takes some getting used to. The good news is it should sort out the overwhelming fatigue I’ve been feeling recently, so bring it on! Wish me luck!

4 thoughts on “The road to diagnosis

  1. Sarah, that was so interesting to read about your diagnosis. You sound really positive today. MND makes no sense in it’s cruel progression and, like you, I wish that you can have some respite in this progression. It’s not like you’re asking for that much. Why is there so little understood and why there is no way to stop or to improve symptoms again is so unfair. MND needs to be better understood so that it can be diagnosed quicker but more importantly cured in the future. Stay strong. You are a source of inspiration. Thank you for writing today. xx

    Liked by 1 person

  2. You are such a good writer, Sarah, and I am full of admiration for you – even more so now – but I always knew you were a special person. Sending you all my love, x

    Liked by 1 person

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