“So, how long have you had M.S.?” Part 3.

At the end of part 2… the optician had advised me to make an appointment with my G.P. ( I later found out that she wondered if I had Type 2 Diabetes. One of the symptoms of that can be a rapid deterioration in eyesight. I knew that, given that I trained as a dietitian, but I’m in constant denial about being in a high risk group. Overweight? No, I’m just storing fat for the winter months. Family history of T2DM? On both sides? Yeah yeah…Genetics doesn’t always work like that. Lack of exercise/sedentary lifestyle/likes a wee Malbec now and again? SHUT UP!) Ahem. Off I went to the G.P.

I’m going to spare you a blow by blow account of every appointment, but the bloods came back as being nice and healthy. I still had all the same symptoms, though, and at this point could barely leave the house, let alone make my way to Edinburgh. I also knew by this point that there was something more significant than just being tired. When I spoke to the G.P., she suggested that I was probably ‘just stressed’, and that I had ‘a history of depression’. That would be the ‘depression’ that was later diagnosed as M.E.

I’d like you to imagine, dear reader, what was going through my mind at that moment. Perhaps I was having a strange reaction to stress…but I was pretty stressed out by losing part of my eyesight, having very painful eyes, losing mobility, and being absolutely exhausted. I was also feeling ‘stressed’ by this woman’s’s attitude – it brought back horrible feelings of having to fight my corner when I had endometriosis, and further back when I had M.E. I would love to say that I calmly suggested that I should be referred to a specialist, but by this time there were tears rolling down my face. I’m sure this was just further evidence to her that I was ‘stressed and depressed’! Nevertheless, she did agree to refer me to neurology, although she did say that she was sure they wouldn’t find anything. Interestingly, the optician later said that if the G.P. hadn’t referred me, she would have done.

Over the next 6 months, I saw a neurologist, had an MRI, then another neurologist, and had a Visual Evoked Potential test and a Sensory Evoked Potential test.

[I mixed up the appointment dates for the 2 evoked potential tests. Imagine my surprise when I went in for what I thought was a fancy eye test, only to be asked to take my trousers off…]

I still wasn’t diagnosed with M.S. by this point (Summer 2016), although there was a recognition that something had happened – not just stress. I had a few neural lesions, including one in my right hand visual cortex. My left eye was slower to react than my right, and I did have an area of impaired peripheral vision. And there were signs of nerve damage in my lower right leg and foot. There was also a recognition that the ill health I had in the early 1990s might be linked. I have been asked more than once if any scans were taken at that point…oh, how I have laughed! Actually, were MRI scans available back then? Hmm. Might need to google that. At this point, M.S. was mooted as a possibility, but ‘probably not’.

January 2017 – I hadn’t deteriorated, but equally, wasn’t much better. I had another MRI, which showed no change. The diagnosis at this point was (and I’m quoting verbatim here), “Not not M.S., but not definitely M.S.” Answers on a postcard please! I was advised that I’d be monitored yearly, and meantime I should try not to worry about it, to lose weight, and not to sleep too much.

Hmm. I was still unwell, and was in a kind of limbo. I also felt quite guilty about being overweight and ‘lazy’. I couldn’t help sleeping, though (the neurologist’s advice was to set an alarm clock. Thanks, I had never thought of that before). And whilst I’m aware that I could still do with losing a couple of stones, I’m metabolically healthy. The weight issue is sometimes a bit of an ‘easy win’ for clinicians, I feel. Clearly, body composition has implications for health, but to advise a patient to go away and lose weight, whilst giving no further advice on how to do so is particularly unhelpful (Rant over).

And then we moved to Yorkshire…in Part 4.

I am SO SORRY that this has turned into War and Peace, or Game of Thrones, or the Narnia Chronicles. Or A Star is Born. We watched that at Easter weekend, and each one of us looked at our phones at the same time to check how long was left. Lady Gaga was very good but I couldn’t make out a word Bradley Cooper was saying. And not much happened. Anyway. I will return with Part 4!

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