Mavie and Me
I have RRMS and I am quite a private person who has never posted anything on Facebook or any other social media site. I cook badly so wouldn’t get many, if any likes and my children are both late teens so there isn’t any best in class forward roll or cycling proficiency certificates to show off and as for ‘girlie’ nights out, they’ve long gone. However, I am about to start the drug Mavenclad, a chemotherapy drug that is used in the treatment of certain types of leukemia and now also used as a disease-modifying drug in RRMS. I’ve been looking for information from a patient’s perspective but there doesn’t appear to be a lot of information out there, so I thought sod it, I will write about my own experience of taking Mavenclad in the hope that it may be of some use to others considering the treatment.
My attitude towards MS
Everyone has a personality type, and some may not appreciate or understand my sod-it attitude towards MS, but it’s my philosophy on most things that come to try us. Such a chronic condition affects people differently, and we all have our own coping mechanisms. Dealing with RRMS to me is like dealing with an annoying relative who turns up time and time again unannounced, overstays their welcome and goes away only to return just as you were getting over their last visit. Like with such visitors there are different coping methods to help you through. You can install blinds and hide from view or if that fails, crack open the wine, unfortunately, that doesn’t work with MS, though other things can help. I do try to stick to an anti-inflammatory diet, though I don’t buy into it being a miracle cure as some people insist. I have also swapped HIIT for yoga and late nights out are practically non-existent. MS is a tricky bugger, it can lull you into a false sense of security, one day you can feel ok and the next you may be pondering a one-way trip to Switzerland regardless of eating wild salmon or a cheeseburger.
I knew it wasn't in my imagination
I was diagnosed with RRMS around 4 years ago, though had suspicions from my early 20’s that I may well have it. I would put the thought to the back of my mind plus in the early 90’s when I did really start to suspect, the media was full of unhelpful stories about so-called Yuppie Flu , often these were derogatory in manner, implying people were making symptoms up, so I just continued as I was but I was steadfast it wasn’t in my imagination. My nicknames during that period were General Malaise and Tatt (tired all the time). Any infection would and still does floor me and I had a bad couple as a student nurse. My tutor was an old school dragon, Stalin of the nursing college. God help you if you yawned in class. I popped copious amounts of Pro Plus with caffeine drinks though can’t say they helped a bit, however drawing pictures of the old battle-axe and passing them to my friend to edit, as she always had a better eye for detail, worked a little.
Referred to a neurologist
During my 30’s symptoms would come and go, and I had long periods of feeling well. In my early 40’s things got worse and I collapsed twice from infections, I had blood tests that showed nothing and just continued to feel crap. It wasn’t until a tooth abscess triggered what I know now was a major relapse that I once again contacted the doctor, this time I was certain I had a neurological condition as it was the first time I had attempted to move and couldn’t. I had tried walking down the stairs and for around 30 seconds I was planted on the landing without being able to move my legs. I felt dreadful and was not even able to collapse to the ground so at least I could try to sit down. When I managed to move, I rang the GP’s and reception suggested I go to A and E, I explained it wasn’t an emergency, this was something that warranted investigation not a trip to an overrun A and E Department as it was neither of those things. My GP saw me that day and ordered routine blood tests. I wasn’t surprised they hadn’t flagged anything up and he explained, as I knew already that didn’t mean there wasn’t anything wrong, it was just that those tests could only rule certain things out. I asked to be referred to a neurologist and he agreed I should see one though was told sympathetically the wait would be 9 months. I paid for a private consultation and was seen within two weeks, some people would say that’s playing the system and I suppose it is, but I felt so poorly and wanted to be seen ASAP whilst all the symptoms were still there. Straight away the neurologist noticed on examination my very brisk reflex reactions which is a sign of damage to the nervous system and I was referred back into the NHS for an MRI and lumbar puncture.
I bet on MS
Results of my tests and a follow up with the neurologist took several months, during that time I continued feeling lousy, suffering severe teeth grinding pain and sleeping for days. I’d wake up feeling just as tired-looking like the love child of Robert Smith and Russell Brand, have a drink and go straight back to sleep. When the date to see the neurologist came through, I waved the letter in the air like I had won a prize. As an ex-nurse I share a gallows sense of humour with many people in the health profession. One close friend who I trained with, the same one I’d pass the drawings of Nurse Stalin to, came along for my results, she wanted to be of support but in truth I wasn’t nervous or worried. It was, however, fantastic to have the company and as usual, no matter where we go, we try to make it into a fun day out, this wasn’t an exception. I had the first appointment of the day, which was fortunate, not only because that meant I was seen early, but the empty waiting room allowed us to do what we do best, play! As George Bernard Shaw said, “We don’t stop playing because we get old, we get old because we stop playing," and I couldn’t agree more. We had already discussed what the diagnosis would probably be. We were both aware of the quiz show The Million Pound Drop and had in the past jokingly referred to guessing my condition this way, so when in the waiting room she pulled out of her bag a homemade game of the same, we were in hysterics. I was delighted and she knew that if given an opportunity in the future I would do something similar for herself. I had a minute to choose which illness I had. My options were, I was mad, I had fibromyalgia, Lyme disease, brain tumour or MS. I put £850.000 on MS and split the remainder between being mad and fibromyalgia. I had to stick post-it notes on where I wanted my ‘money ‘to go, this only added to the hilarity as she was shouting your time is nearly up and I was doubled over saying my fingers are too bloody numb to peel the stickers apart. We gained composure just before I was seen. My neurologist, who is a lovely guy, struggled to get to the point, he obviously found it difficult to tell me it was indeed MS. Slam dunk.
A diagnosis felt strangely liberating
People may see me as being flippant, perhaps even thinking it’s because of brain lesions, but suffice to say the only times I got reprimanded in school was from laughing. Each person reacts to news differently and I have always had a dark sense of humour. I had been waiting for this day for around 30 years, so it was no big shock, I was more in denial of turning 50 last year than I was with the diagnosis. I remember on that morning one elderly couple waiting to see the doctor looking up as we left the room laughing over something , they smiled broadly, obviously thinking I had been given good news, actually to me I had, I had a diagnosis at last and could now say in the words of Spike Milligan ‘I told you I was ill' but actually not have to wait for them to be inscribed. There are so many worse things to have than my particular form of MS, when I see younger people in clinic with primary progressive, I feel so sad for them and very lucky that I have a much slower form of the disease. At their age I had no real worries, I’ve climbed trees and danced on tables. Nothing had really changed for me with the news other than being proven right which everybody loves. When I lost my grip of a bottle of red wine in Tesco’s later that week, it gave me the first opportunity to say ‘oops I have MS.' I felt strangely liberated, I would have been happy for them to announce it over the tannoy ‘spillage at the checkout due to MS' I had a legit excuse and wasn’t embarrassed to use it, plus I had already paid and wasn’t sure if I was entitled to a replacement which I did swiftly get. A week later and once again whilst packing my bags I lost my grip, but this time with a large jar of beetroot (anti-inflammatory diet). Same mess different aroma. I’m sure the cleaner thought I was taking the piss as she recognised me straight off from the week before. It’s easier to stick to the 4th emergency services of home delivery. It’s invaluable, I feel the urge to pull over to the side when I see a Tesco or Ocado van in my rear-view mirror and let them through, they could just be on the way to saving someone’s life with a cold Lucozade and loaf of bread, gluten-free of course.
Fortunate to have a diagnosis
I really consider myself fortunate to be given a diagnosis. I had waited years to get an answer and now I had one. Most people couldn’t and a few still can’t comprehend that I can look ok but feel dreadful. To be honest I got immediately tired (nothing new) trying to explain why I couldn’t do certain things, what my symptoms were, that it wasn’t the end of the world, I probably wasn’t going to end up in a wheelchair (one of the most common misconceptions). Friends and family now know that I’ll disappear if I am having a bad spell and then POOF, suddenly reappear again with no discussion or explanation needed, or they can’t be bothered asking, whilst I can’t be bothered explaining. Perfect.
Had to give up running and hiking
I had been on the disease-modifying drug Copaxone for around two years and found the self-administer of the injections painless as long as I didn’t inject into my thigh, if I did it was like being given a dead leg, probably only those with siblings, particularly brothers will understand. I used to be a runner but had to give that up a few years ago so instead focused on walking, often covering around 50 miles a week, I was also never happier than scrambling up a mountain, but I can’t do either now. I have started with foot drop in my left foot, so much that even after just about 2O mins I start to struggle lifting my foot properly, even if I go at a snail’s pace. You would have to observe carefully to see I was struggling as it’s not obvious. As for crossing the road I must be sure that I can safely cross without needing to run out of the way of unexpected traffic. I don’t trust that the signals from my brain to my legs would reach in time and it could all get very messy.
Switched to Mavenclad
My symptoms had definitely worsened, and new ones had appeared. I have had a repeat MRI and as expected, it showed new lesions on my brain and spine. Due to the injections not working for me, I was offered Mavenclad to try. I do feel very lucky to live in a country that has a wonderful, although beleaguered health care system and hopefully the drug Mavenclad will dampen my immune system which in turn can help stop relapses and further damage to my nervous system. Some people hesitate in trying new treatments, for me it was an easy choice to make. My MS has been getting worse, so here goes, nothing to lose, hopefully not even my hair.
How many specialists did you see before finding "The One"?