Tag Archives: MS

“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.

The Preliminary Scoping Phase

That sounds quite official, doesn’t it? Day 4 of my extremely unscientific hot chocolate ‘project’. I’m calling this the preliminary scoping phase…well, it’s not a controlled experiment, is it? I’m happy that I’ve actually prepared and drank the hot choc for 4 days in a row. That’s participant engagement right there! Some observations:

Given that I really don’t have a sweet tooth, this has been less effort for me than I anticipated. Mind you, the drink I’m making is quite bitter. My husband commented that it was ‘quite messy’. No, that’s me making a mess, not the drink.

The drink is very filling. Remember, I’m making it with instant (water-based) hot chocolate and approximately 20g of high flavanol cacao (perhaps I’ll weigh it tomorrow. It’s probably slightly more than 20g, given the heapedness of my heaped tablespoon). The calorific value is approximately 171kcal per serving (that’s 107 kcal for the hot choc, 64 kcal for the cacao). Not exactly a small snack, but I’m not bothered about that, because my appetite has been quite low recently.

I’ve not been taking it at the same time every day. My primary focus has been making and drinking the drink, and I’ve managed that. Yes, it has only been 4 days, but I’m that kind of person who looks for a medal for flossing her teeth once a month ( MY DENTIST SAID THIS WAS FINE BECAUSE IT’S BETTER THAN NOTHING. Stop judging me). Good job I don’t wear a lot of make up – I’d have to chip it off every so often and my pillowcases would need bleached. I digress. 4 days in a row is a start.

Talking of which, tomorrow is my last day for a while. I’m going into hospital this week to have my gallbladder removed, because I’m middle aged, unfit, and a bit chunky. I’m such a good catch! It’s nothing to do with the MS, although the MS treatment I’m on (Lemtrada) can exacerbate already dodgy gallbladders. Ach, I wasn’t doing anything else anyway. So, now that I’ve done the preliminary scoping phase, I can start again properly when I’m on my feet again.

The lead author of the original study sent me a copy of the original research paper (Thank you very much, Dr Coe). Turns out I would not have been eligible for the original study anyway – my neurologist thinks I may have had a relapse recently (oh, but I have felt absolutely grim!), and I’ve to have an MRI and an evoked potential test to establish if this is the case. The original study – quite rightly – ruled out patients who had had a relapse within the previous 3 months.

Do I think the hot chocolate has worked at all? Well. The original study looked at fatigue and fatiguability, and I really don’t think 4 days is enough to judge. I’ve certainly felt more mentally alert and my concentration has been better in the period after consumption, allowing for about half an hour digestive transit time, but I think I’m coming out of this period of relapse/exacerbation anyway, so it’s very difficult to assess. However, I will keep going – allowing for the break later this week and next – since one of my objectives was to assess for myself how practical a single nutrient intervention might be. Nutritional interventions are, by their very nature, complex, and don’t always show an immediate effect (perhaps caffeine is a good example of an fast-acting intervention effect) Obviously, I’m not having bloods taken for this, so I have no idea whether there’s even any kind of cumulative effect on biochemistry. My only measures are of self observed Quality of Life markers, and when I’m back on my feet, I will attempt a more structured and better recorded project.

Meantime, I think I’ve done enough to be able to establish that a single mug of hot chocolate is not a miracle cure…don’t get me started on the mass media’s ‘understanding’ of health and science. That’s for another blog post 🙂