“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.

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