Tag Archives: Diagnosis

“So, how long have you had M.S.?” Part 4b.

Last part, promise. Where were we? Moved to Yorkshire, peacock, right. I actually had the energy and stamina to look for a place to live, and pack up and organise our move, mostly by myself since my husband had already started his new job and was staying in a hotel. My eyesight was still damaged – I don’t think it will ever recover, but I’ve adapted. Everything else was pretty good though, so, after a summer of visitors descending on us from Scotland and Liverpool, I started a job in a local sixth form college, in a student support role.

The job was really busy, mentally and physically: I was a personal tutor for approximately 200 students per week, with all that entailed, and my work was spread across several rooms in the building. There were a lot of stairs! By the second month in, I was in full swing of another bout of optic neuritis. And I was exhausted. My G.P. wrote to the nearest neurology department to ask if I could be seen quickly, since this seemed to be very similar to what had happened in 2015. Unfortunately, I had to hand in my notice at my job – I physically could not cope. That was a little disheartening.

25th January 2018: after another MRI, I had a neurology appointment. The neurologist showed me my scan…oh dear. There were quite a few bright white patches, indicating inflammation and potential lesions. And he said, “Well, you’ve clearly got M.S.” and then said something else. I have no idea what he said – I looked at my husband, and reached out for his hand…I think he looked as shocked as I felt. I don’t really recall what else was said during that appointment. I do know that this particular neurologist would have been very thorough, and practical, but I was completely numb. The neurologist did say that I looked like I wasn’t expecting to be told that I had MS, so I told him about my experience with the neurologist in Glasgow. He explained why that neurologist might have been more reluctant with his diagnosis ( something about being too strict with the McDonald Criteria? Forgive me if I can’t remember), but that in his view, I most definitely had MS, and from my medical history, I may have had it since my late teens. Oh. Right you are then.

The next 6 months were a bit full on. The neurologist referred me to the MS Nurse team, and gave me lots of information about Disease Modifying Drugs. At one point, I was going to be taking Tecfidera – I actually had the first box in my sweaty little hands – but that decision was scrapped when it was shown, via another MRI, that I’d had at least one more relapse since the ‘official’ diagnosis. The latest load of symptoms involved my left hand and arm going numb and unable to move. My existing symptoms had flared up massively as well: I remember sitting down one day and realising that I couldn’t get back up. My left hand side was weak, my right leg kept collapsing, and I was too fatigued to move. After much discussion, pondering, weighing up consequences etc – the MS team and I decided to try Alemtuzumab, or Lemtrada to give it a more pronouncable name.

I had my first round of Lemtrada in August 2018, and will be having my second round in August this year. That’s definitely a post for another day. I’ve linked to some information about it if you want to know more about it.

Where am I now? Well, Relapsing Remitting MS is like an ocean – I have calm days and stormy days. Sometimes I can see the waves coming and plan accordingly, and sometimes I can’t and just have to ride them out the best I can. I’m still trying to understand what is happening to me, and that has been quite difficult at times. But I have a lot of support, and it could be a lot worse. I have a diagnosis, and am receiving treatment. That’s half the battle sometimes.

The answer to the question, “So, how long have you had M.S.?” is, as you can see, complicated! Officially, since last year. Unofficially, possibly 28 years? I’m not convinced that it would have been wholly beneficial for me to have been diagnosed at 19 unless there had been treatment. As it is, I got worse at a time when there is treatment and support. It is what it is…let’s see what happens next.

“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!

“So, how long have you had M.S.?” Part 2.

Where were we? Ah yes, 1995. I was ‘better’. I think a quick gallop through the next 20 years will suffice ( sorry, I’m having to take a deep breath here. 1995 was more than 20 years ago. How did that happen?).

1995 to 2003 – married, divorced, BA in Educational Studies. Jobs in e learning and internet content management. Symptoms – well, I still had that right leg dragging thing when I was tired. And I was tired a lot, but I put that down to having a busy and, at times, stressful, life. It wasn’t as bad as the early 1990s though.

2003 – I was diagnosed with severe endometriosis, culminating in extensive surgery. Endometriosis is another ‘difficult to diagnose’ one: I had been going to the G.P. for what felt like years, complaining about abdominal pain. Clearly, it would not be prudent nor safe to send everyone with a uterus off for a diagnostic laparoscopy on initial complaints of pain, but I had a good few years of being told that it would settle down when I had a baby. Or that I had IBS. Well, I was never going to have that baby: my insides had been messed up for quite some time. And if I did have IBS…well, everyone’s bowels would be a bit irritated with being infiltrated in 2 places by endometrial tissue. Anyway. It was very painful. Was it anything to do with M.S.? No idea. Perhaps there’s an autoimmune link somewhere?

Let’s skip on our merry way to 2015…after obtaining a 2nd degree, this time in Human Nutrition with Dietetics, I went to work in Liverpool as a lecturer in Nutritional Science (I loved that job. Loved Liverpool, still do). I was made redundant, so I moved back to Glasgow to be with my shiny new husband (I’m still with this one. He’s very lovely. No plans to let this one go. I’ve even got adult stepchildren. See, there was no need for me to risk a prolapse by giving birth! Every cloud…) Clearly, I needed to do something, so I started a course in Edinburgh. Edinburgh is 50 miles away from Glasgow, and I don’t drive, so I was doing 14 hour days by the time you factor in public transport. I managed that for 3 weeks…

October 2015. Picture this: a frustrated, pale, ginger, angry-looking woman trekking through Edinburgh, bumping into lamp-posts, buildings, and people, limping as she goes, and swearing as quietly as she can under her breath, for this is Edinburgh and they don’t like Glaswegians at the best of times, let alone ones who appear to have been on the Buckfast at 8 o clock in the morning.

[Interjection: I’m from the West of Scotland, not actually Glasgow but close. Also, I’ve never had Buckfast. It looks horrible.]

The frustrated, pale etc woman was me. For some reason, the peripheral vision had deteriorated in my left eye. My eyesight seemed really bad anyway. My left eye was quite sore too. I was absolutely exhausted, perhaps that’s why my right leg was dragging?

I’ve always been very myopic, so off I went for an eye test. They confirmed that my prescription was much worse than it had been 2 years before, and that my peripheral vision did seem to be impaired, but my eyes were physiologically OK. Maybe I should go to the doctor?

I think we know what comes next, but I’m going to have a Part 3…

“So, how long have you had M.S.?” Part 1.

During various medical appointments, including optician and dental appointments, the question has been asked, “So, how long have you had M.S.?” The ‘official’ answer is ‘since January 2018’, but that was simply the point at which I was diagnosed. The true answer is more difficult to pinpoint. I’m not alone in having probably had M.S. for quite some time – for example, the journalist Caroline Wyatt seems to have had it since the early 1990s but remained undiagnosed until 2015. Parts of her story really resonated with me – her symptoms, the length of time to diagnosis – and I have found that it helped me to know that I wasn’t the only one who struggled. I thought that recording my own experiences might be useful to someone (or, indeed, helpful to myself next time I have to recount my medical history to a new clinician). I’ll try to keep it short…ha. Have you seen my writing? I don’t do brevity, and I do do tangents. I’ll try, honestly.

Age 19: I was a second year undergraduate, away from home. I probably didn’t look after myself particularly well, but I wasn’t the only one. So when I went to my G.P. to complain about feeling constantly tired, I was given standard blood tests (F.B.C.s, U. & E.s) and when they came back within normal range, I was advised that I was most likely depressed, given a prescription for antidepressants, and told to come back in 4 weeks. So far, so standard early 1990s student experience. The antidepressants did make me feel more…motivated? I certainly had less of a low mood, but I was still exhausted and I was experiencing overt physical symptoms that were detrimental to my studies and my life in general. My right leg started to drag behind me like it was a truculent toddler being dragged to bed; my cognition and memory were impaired: I found reading really difficult, which was not ideal for a Philosophy and English student.  Yet, my G.P. continued to insist I ‘had depression’. Eventually, I had to take a break from my studies and restart second year the following academic year.

Age 20: after a period of 6 months of rest and recovery, I restarted second year. It didn’t take that long – 6 weeks, perhaps?  – until the exhaustion began again. Once again, back to the G.P. Once again, back on antidepressants. Once again, improved mood, but still exhausted. The other physical symptoms returned too, with the addition of speech difficulties. Sometimes I was too tired to be able to form a coherent sentence.

At this point, the G.P. I saw was a locum. She decided to do more, wider ranging blood tests, and when these came back, it appeared that at some point in my life I had contracted Coxackie B virus, therefore, she concluded, I had a post viral syndrome called M.E. At last I had a label – yes, M.E. was still known as ‘Yuppie Flu’, or (as my best friend put it, ‘ Lying in bed and having a cup of tea disease’) but at least it was something properly medical. Again, I would like to remind you, the reader, that it was still the early 1990s, I was young, exhausted, and ready to accept any diagnosis that wasn’t depression (there was still a fair amount of stigma about mental health issues back then).

With hindsight, although I’m still grateful that I was being taken seriously and not dismissed as a ‘typical student’, I think the G.P. might have jumped on the alternative diagnosis a little bit too soon. Perhaps M.E. should not have been diagnosed based on one finding of an antibody. But then, I’m saying that with the perspective of a middle-aged woman who has had a lot of education, including clinical. I’m more critical. More confident. And the body of knowledge is greater, and more accessible. I digress: it was what it was, and apparently, that was M.E. I withdrew from my course of studies entirely – my mind and body could not manage anything beyond the basics.

Over the following 3 years, I got better, then worse, then better, then worse…I didn’t move home – I stayed put in the university town where my friends ( and future first husband) were. And by the mid 1990s, I was married, and ‘better’. I moved back to Glasgow, and started another university course.

This is already becoming quite a long tale… let’s skip a few years to Part 2.