Following my last appointment, where my Specialist and Danny told me all about my treatment options I’ve had a lot of thinking to do. My decision hasn’t changed from what I had decided in my last post.
Today, I confirmed to Danny that the route I want to go down, is Lemtrada.
In the time since my last appointment, I’ve been in touch with Ana, a patient of Danny’s who has responded well to treatment. Ruth, a new friend who also has MS, added me to a group on Facebook for people who are thinking about Lemtrada as a treatment option, or already going through it. I was a bit wary of this at first as we all know my prior experience of forums kind of sucks. I’ve found it a very real, balanced environment though. It’s not full of whingers. It’s really supportive and feels far less “toxic” than some of the other forums that I had previously come across. If anything it’s helped me confirm my decision.
So that’s it.
Next steps are my case going to an evaluation panel where my Specialist applies for funding. From what I gather, this is more of a tick box and with the story that my spine is telling with so many lesions, it’s without question that he’ll be successful. After that I’ll hear from my Specialist, with a date.
Then it’s just sitting tight and waiting (yeah, waiting again!) for a date to go into hospital. The challenge is waiting for a bed, but Danny thinks that I should be in by June.
I need to start thinking of all the questions to ask him, because here’s how good my questions were today:
– Can I travel to Essex if I decide to spend some of my recovery down there?
– Are you going to put me in a cotton wool house?
– Can I still hang out with Poppy (the dog)?
– Can I still drink gin?
No. I don’t need to be wrapped up in cotton wool, and I can live a reasonably normal life in the period after treatment within reason (i.e. keep away from “germy” folk). I can have gin, hang out with Poppy and go to Essex if I decide to do that.
Today, I actually feel elated. I feel like I’m getting somewhere. And as I said to Louise the other day:
It’s been difficult for me to write this blog, hence why this one has taken a little longer to come compared to the others, which have more or less been churned out. The difficulty being, that my most recent appointment didn’t really go as I expected it to go, with a combination of both good and bad news. This has lead to a lot of questions and some huge decisions for me to make. It’s definitely easier to write these blog posts once the dust has settled a bit!
It’s been a blur of appointments since I first stepped into the Optician’s back in June. Following my last appointment where I was diagnosed, I’ve had a further two. Early March, I met with my MS Nurse, Danny. I like Danny. He definitely knows his stuff!
My first meeting with him wasn’t much more than an initial introduction and confirmation of what I already knew about the condition. He talked me through what I could expect from him, which included three monthly appointments. He also shed some light on my next appointment, in a further 10 days, with an MS Specialist. Last Friday I had that appointment with my specialist.
My appointment was at 9 am at Salford Royal. I was a bit miffed as it’s a bit of a trek (my other appointments had been in Wigan), but the way the dates fell, Dave was working a Saturday so was able to take Friday off to be with me, which was a huge relief. I was really struck at what a lovely, warm hospital Salford is. I get the impression that this is fairly recent, but compared to my experience of hospitals historically, this one felt far more fresh and modern.
I was called in for my appointment by an MS Nurse, Danielle, who sat me down and told me she needed to get me to do a couple of tests prior to meeting with the specialist. I was used to being prodded, poked, liquids taken from me and liquids added to me as well by this point so I wasn’t phased. But it wasn’t those types of test.
You know the show with Philip Schofield, The Cube? It was like that! I had to put all these pegs into holes and take them out again with one hand, and then do it with the other hand, all the while Danielle was sat with a stopwatch in her hand. Oh the pressure! She explained to me that she was just testing how long it took me so that a benchmark was set. That way they could test how long it took me next time, and check for degeneration. She also timed a 25 metre walk, again, to set a benchmark for next time I was in.
Following a ten minute session in The Cube, I was then sent to wait to be called in.
If there’s one thing that sticks in my mind about all the medical professionals I’ve encountered, it’s how kind, friendly and reassuring they are, and this specialist was no exception. I went into the consultation room, and took a seat. He asked me to give him a timeline of my symptoms and everything that had happened (I was getting very well rehearsed in this by now!) and reviewed my scans.
He looked through pictures of both my brain and spine, then asked me to sit up on the bed. He did all the reflex tests just like Dr. Tyne had. He tested my eye sight (then started laughing at me for making the letters up when I couldn’t see them!), and did the tuning fork thing as well. This one was particularly concerning, as he’d whack the thing that looked like a tuning fork, then touched it on my foot asking me to tell him when I couldn’t feel it anymore. Within roughly two seconds I could no longer feel it. This didn’t really bother me until he repeated it on my hands and lower arms and I could still feel it about 10 seconds later. Definitely something wrong with my lower limbs there…
Once all the tests were finished, he sat me down, made notes on what had just happened and then told me that I’ve clearly had this going on for a very long time. He said that my brain wasn’t causing him any concern, but there were so many lesions on my spine that it suggested that my MS was very active. One more relapse, could result in irreversible damage. Equally, that might not be the case. But I may not continue to be as lucky as I have been. He even said that he was surprised that in spite of all the lesions that I had, I was still as mobile as I am.
He then went on to tell me, that in terms of medication, he wanted to hit it hard and aggressively.
This came as a shock. Perhaps even the toughest blow I’ve had so far. I was almost expecting to go into that appointment and be told that it wasn’t bad enough to medicate (you only qualify if you’ve had two relapses in two years and I thought that I might have missed that slightly). Having read all sorts of horror stories on forums (bloody forums!) about them, I thought there was a chance I’d even make the conscious decision to not medicate. But not this.
He presented three options to me. Mavenclad, Tysabri and Lemtrada. All come with their own risks and varying levels of effectiveness. There are pros and cons to all. Mavenclad for example is only about 60% effective in terms of halting progression. Tysabri is about 80% effective but it involves a day in hospital for an infusion every 28 days. Lemtrada is the one that medical professionals seem keen for me to go on. It’s intense, but it’s also the one that although on paper it’s the same level of effectiveness as Tysabri, in practice it’s a touch more.
I was really overwhelmed with all the information. This is something I’ve struggled more and more with – if I can get the same information by reading it somewhere, please just stop talking to me, and give me the written stuff! I asked if there was any written material, leaflets or websites available. Anything with everything I needed to know in a written down format so that I could digest it at my own pace.
As it happened, Danny was at the hospital that day, and not out and about visiting patients. After he took some of my blood (they needed to prove that I’ve had chicken pox and apparently my word isn’t enough!) he grabbed a free room and talked all the options through with me. Dave and I probably could have made a decision there and then that Lemtrada was the option that I wanted to go with, but in spite of the urgency to make a decision, he still wanted me to take a week to reflect before confirming what I wanted to go with.
I’d planned to work from home that afternoon, but honestly, my brain was a mess! I didn’t have a flipping clue what I wanted to do. I was in shock from finding out my MS has caused more spinal damage than anticipated. I was scared, but equally reassured by the treatment options available to me.
My Dad is the absolute voice of reason so although through discussing it with Dave and Danny, my mind was pretty made up on Lemtrada, I needed his opinion. I sent him an email detailing the basics of each. He read through it but ultimately felt that we needed to go with medical opinion.
So Lemtrada it is. I’ll be confirming this choice to Danny on Monday.
Lemtrada works by killing off your white blood cells – your immune system. I’m being switched off and on again! The idea is that the new white blood cells don’t do what my current ones are doing (which is attacking my nerves). You have two rounds of it, 12 months apart. Probably within the next two months, I will be an in patient for five days at Salford whilst I receive my first round of infusion. I’ll get sent home with a sick note from work for about six weeks and all the antibiotics as I won’t be able to fight infection. Then I go back again in another year for round two, which only goes on for three days this time.
The only other snag is that I’ll have to go for monthly blood and urine samples at Wigan Infirmery for five years. This is just to keep on top of the more serious possible side effects such as thyroid problems, clotting issues and kidney failure. I can stomach a needle in me every month though to keep on top of that!
And in amongst all of this, the good news is that I still don’t need a lumbar puncture!
As I came into the new year, and I still didn’t have an appointment of any kind, I found myself getting more and more frustrated with the lack of communication from the hospital. I’d been putting on this brave face, but it was wearing thin. I say putting on – I wasn’t. It was real, but cracks were definitely starting to appear. Limbo and I weren’t really getting along very well.
I’d been quite open with people about what I was going through. I’d talked a lot about losing the sight in my left eye and never really thought that it would end in such a serious diagnosis. People inevitably asked how my eyes were doing, which then resulted in a conversation about what had happened since.
I’d more or less become accepting of my unconfirmed fate, but then equally I started to worry. What if there wasn’t anything wrong with me, and there had been all this fuss for nothing? How would that go down when someone asked me how I’d got on, and I’d be saying “oh that? I was just being melodramatic and it was nothing!”
During the second week of January, I was at work and Deb asked me how I was getting on and where I was up to. Every emotion that I’d stopped myself from feeling came tumbling out. See, so many people had told me how brave and strong I was being. I felt the need to live up to that, and I made it so it wasn’t ok for me to feel what I perceived to be, the less positive emotions. But all it took was one person to ask the right question, and I couldn’t hold that brave facade.
After a bloody good cry, Deb helped me set myself some actions (I know that’s so transactional and “work like”). I needed to feel like I was in control somehow, and having a “checklist” of things to do helped that.
See my GP to sort out my Vitamin D (my prescription hadn’t been right and I needed more tablets)
Call my Neurologist’s secretary for an update
Contact our employee assistance programme at work. I didn’t think I needed to speak to someone, but it was probably worth sounding off to someone before it became something more serious
My GP was easily sorted, as was contacting our employee assistance programme. The bit I struggled to do was contact my Neurologist’s secretary. It wasn’t that I was trying to bury my head in the sand. I just didn’t want to be a pain in the arse.
With a bit of a nudge, I did call the hospital. When I told them my name, before I’d even said what I wanted, she told me she’d been dealing with trying to get all my records from Liverpool just that morning. I couldn’t believe it had taken that long! How hard could it be to just email over some files?
She told me that she had managed to finally get all my information together (I forgot to mention before, when I went to my first appointment with Dr Tyne, she had nothing except my referral letter. She couldn’t get access to the MRI’s and all the rest of my records without my permission). Now that they had all my information , although Dr Tyne was on annual leave that week, she was confident I would hear from her by the end of the following week.
What a relief. I had another appointment in sight.
The secretary must have sensed my stress and need to see someone for more answers, because the following Wednesday I got a phone call from her asking me if I could come in the following morning to see Dr. Tyne.
Dave had a day’s holiday he needed to use by the following Wednesday, so he was able to take the day off, and come with me to this appointment.
The best news that Dr. Tyne was going to give me that day, was that I didn’t need a lumbar puncture. She showed me the brain and spinal MRI scans, and pointed out wispy areas of white on both. These were signs of inflammation, lesions or scarring (these words seem to be used interchangeably). She had all the information that she needed.
I had MS.
She confirmed that it was relapsing remitting, and discussed next steps. I would have an appointment with an MS Nurse, and I would be referred to a Neurologist who specialises in MS, based at Salford Royal. This specialist would be able to discuss how I could medicate to prevent the progression of the disease. Dr Tyne said it would likely be oral, or injected medication, either daily or a number of times a week. She said there was a good chance that my MS wasn’t aggressive enough for anything more full on.
I left in reasonably good spirits – instead of feeling like a weight had landed on my shoulders, I felt like a weight had been lifted from them. It was bittersweet to hear my diagnosis. Deep down, I’d had a pretty good idea that that’s what it was for four months. If we include the time from when I went blind, I’d had problems for seven months. That’s a long time. I was so relieved to know that so much about how I am, was now explained. I knew I’d have more waiting to do, but the diagnosis and confirmation was the key piece of information that I needed to be able to completely come to terms with everything that was happening to me.
I called Steph to tell her the outcome of the meeting. She asked me if I was taking the rest of the day off, and the Friday off. I decided that I would, even though I wasn’t sure if I needed it. In hindsight, I’m glad that I did. I needed that time to process the information more than I appreciated.
I never really intended there to be so many parts to this story! So if you’re still with me, Thanks! I’ve wittered on quite a bit, but I’ll keep going.
Once I returned from holiday at the end of September, I waited for what felt like ages for my first appointment with a Neurologist. It was a strange period of time, I didn’t know what was wrong. I didn’t have somebody to contact. I spent time wondering if I’d been forgotten and lost in the system. Much as the NHS have been amazing, the lack of communication has driven me mad at times!
Whilst Dave and I had been on holiday, my Mum and Dad had booked a cottage for a week in Pennistone. They’d booked it so it was big enough for my brother and Dave and I to go and join them for a few days. The plan was, my Mum and Dad would travel up on Friday, as would Matt (my brother) and then Dave and I would either join them later that evening, or Saturday morning. We were due to go on 3rd November, but as luck would have it, my first appointment with a neurologist ended up being on the 2nd November.
My Mum and Dad absolutely made my day when they told me that they were going to be coming up the day before so that they could come to my appointment with me (well, one of them at least – they had their new dog, Reggie, in tow!) It was like it was all meant to be.
In the end, it was my Mum and Dave that came to the appointment with me.
I really liked Dr Tyne. She didn’t know whether or not I had been told what I was having investigated. All she had was a letter from Liverpool telling her that I was being referred and why. So the first thing she asked was if I knew why I was there.
I then went on to give her a potted history of symptoms and experiences, not unlike the story I’ve told via these blogs. It was just as well Mum and Dave were there, as they managed to fill lots of gaps as I was forgetting so much. As the symptoms were tumbling out of my mouth, I started to realise just how much wasn’t quite right with me. I astounded by how much I had let slide, and not been to see anybody about. Everything individually seemed so small and insignificant, but all together, I realised just how NOT right everything was.
She took me off into a side room, leaving Dave and my Mum in the main room. Here, she seemed to be testing my reflexes and reactions. She asked me to follow her finger with my eyes, she pricked me with a pin to see if I could feel pain, and she tapped what looked like a tuning fork and tested for how long I could feel the vibrations in different parts of my body. She made me stand still with my eyes closed, walk along with one foot in front of the other, made me push against her with my leg and did that thing where she tapped just below my knee to test my reaction. My performance in these tests certainly varied!
After completing those tests, I was told that I’d need to go for more tests. She wasn’t prepared to commit to MS as the diagnosis at that stage and wanted to rule out other possibilities, for example Lupus. Even so, through our discussion, she kept on coming back to MS.
She suggested that if I had relapsing remitting MS, I would likely be eligible for medication, as I’d had the required two relapses in two years. In order to determine if that was the case though, I needed to have blood tests and a further MRI scan on my spine.
Unless my symptoms were completely characteristic of MS, I’d also require a lumbar puncture. This was the bit that scared me the most, and I didn’t hesitate in telling her so. She told me that at Salford Royal, where I would be going, they do them five times a day and I’d be fine. This helped a little bit, but not a lot. I still wanted to avoid it if I could!
Before we left, she asked us if we had any questions, but with nothing more to ask, we left.
I struggled to hold it together as we made our way out and once again the floodgates opened. Seeing that it was hard for my Mum to watch me go through this, really got to me. I felt awful for her and my Dad.
Dave came with me to get my bloods done. I’m not a fan of needles but I’m certainly not terrified of them. The seven vials of blood they took off me was a lot though! It went on forever.
A few weeks later and I had the results back. In the spirit of taking whatever wins you can, not that I was worried about it in the first place, I was thrilled to find out that I didn’t have Hepatitis, Syphilis or HIV. I did however have extremely low levels of Vitamin D and needed to get them replaced by my GP.
A bit of Googling told me that Vitamin D deficiency is normal in this country, but particularly low levels were common in MS patients. In all honesty it felt like another nail in my fate.
Whilst waiting for an appointment with my GP, I got some high dosage one a day, vitamin D supplements in Tesco. That dosage is not high. What is a high dosage, is twenty times the strength twice a day for ten days and once a week for six months. My GP prescribed me that after discovering that my Vitamin D levels weren’t just low, they were non-existent!
My spinal MRI was in early December, and I was told I’d get results in about two weeks. Great! I’d get my answers before Christmas!
Christmas came and went – I had no letters calling me in to give me answers but on the plus side, I also didn’t have a letter calling me in for that lumbar puncture.
Then it was the new year. And I was sick of waiting around.
Today, I have woken up feeling the best that I have in a good few weeks, possibly even months. The things that particularly aggravate me daily, aren’t there. My head is clear and doesn’t feel like it’s stuck in an airless vacuum. I feel more awake and alert (surprising since I got less than six hours sleep last night). I feel present. The usual tingling in my leg has been at a real minimum all day.
My last blog post, as I said at the time, was not one I ever planned to write. This one here is the next part of my story. I got a lot from writing my last post though, and it definitely cleared my head. I was even able to find my “Why Me?” just a day later, which is a story I may share another time.
Two days after I had been in hospital and been told that I might have MS, Dave and I flew out to Athens for our holiday. That meant that I had two solid weeks, away from reality to come to terms with what I was facing.
I’m not going to lie – I spent close to the first three or four days flinging myself about crying. If Dave was asleep, I’d spend the time googling, trying to understand what MS actually is. This would set me off on a totally new wave of worry and hysteria and on a number of times during that holiday, Dave woke up to find me in floods of tears.
I just had so many questions. Was I going to be in a wheelchair? What happens next? Is there a chance that it’s something else that’s far less serious? What even is MS?
I learned very quickly, that forums were not my friend. They were helpful for about five minutes, but once you start trawling through posts, it gets really tough to read. It’s full of negativity and people discussing their struggles. It frightened the life out of me. The thing is, people only turn to a forum when they feel rubbish. They don’t do it when they feel good do they? No – when they are symptom free and feeling good, they’re out there, enjoying life.
I discovered a couple of apps too. One was called MS Buddy (remember the name of this. I’ve got a brilliant story to tell you about it some time). I liked the look of this one – it paired you up with someone who had the same type of MS as you. It also kept sending me these fab notifications for news stories about medicine progression. The only snag was, that I couldn’t actually read the articles as I wasn’t signed up to it yet. In order to sign up, you needed to have a diagnosis of MS.
Like the forums though, by and large, these apps were unhelpful.
I found reputable sources in the form of the NHS website along with the MS Society, MS Trust and MS-UK sites though, and I learned so much. What I write next is by no means the medical dictionary answer. There’s a possibility that parts may not even be quite accurate, but this is MS as I understand it…
MS is a neurological condition which affects your brain and spinal cord. The “insulation” that protects your nerves (myelin) gets damaged because your immune system mistakes myelin for a foreign body and just attacks it. Your body can repair that which is great, but it leaves behind scarring, lesions or signs of inflammation on your brain and spinal cord, and you may not recover 100%.
About 100,000 people in the UK have MS, so I’m certainly not in a tiny minority. About two-thirds of sufferers are female. People tend to get diagnosed in their early twenties, up to late thirties, but you can be diagnosed at any age. Nobody knows what the cause is, and there’s no cure.
There’s a number of different types of MS. Relapsing Remitting (which I have, along with roughly 85% of people with MS) is where you have obvious attacks of symptoms, where everything gets more severe than it usually is for a few weeks. Quite often, you’ll see new symptoms in these “episodes”. The good news is that with relapsing remitting MS, you can take medication, called a disease modifying therapy (DMT). It stops the relapses and prevents progression, or worsening of symptoms.
Progressive MS takes two forms, primary and secondary. In primary progressive, right from the start of developing the illness, symptoms just gradually worsen, without respite. Secondary progressive occurs when someone with relapsing remitting is no longer recovering between episodes as the nerve damage has gotten so bad.
There’s also progressive relapsing MS, where symptoms slowly worsen, but in additioin, there are attacks, or episodes along with gradual deterioration.
MS affects everybody that suffers with it in a different way. You can get symptoms in any part of your body. This means that if you know someone else who has MS, my experience is likely to be quite different, but there’s some things that are pretty common for all.
Through researching, I learned that the optic neuritis I’d experienced is one of the obvious early symptoms of MS. I wouldn’t say it was an early one for me, but it was certainly the “concrete evidence” needed to go through with making a diagnosis. Neurological symptoms such as tingling, are perceived to be a bit vague, so doesn’t tend to lead to being tested for MS.
As I looked down the list of symptoms that I’d found, the whole previous six years fell into place like a jigsaw puzzle. I knew in my heart at that point that I would eventually be diagnosed with MS. I couldn’t see how it could be much else. They were all there:
Balance, walking and dizziness
Eyes and Sight
Loss of control of limbs
Spasms and Stiffness
Things that I’d not even tried to explain away and just thought were normal, were even coming up. I get this weird cramp and stiffness in my left leg from time to time, which often leads to my knee buckling. I imagine I look like one of those toys that I had as a kid. You know the ones – you pushed up the base and their legs gave way, and then as soon as you released the base, they would stand up normally again. I never really read too much into these. That happens to everyone. Right? (Wrong!)
I googled “conditions misdiagnosed as MS” as well during this period of time, and although there were things that were similar to the symptoms I had, they just didn’t feel right.
After four days on an emotional rollercoaster, I had learned as much as I possibly could about MS. I resolved that I couldn’t ignore the fact that the ophthalmologist had pointed out “abnormalities on my brain” (yes I know what you’re thinking. I’ve heard that joke 100 times!)
I’d be naive to think that this was all something of nothing.
This is a short one today and it is definitely not one that I thought I would write. I had it all planned out, writing my story. I definitely didn’t factor today’s part of the story into it.
I thought about hiding how I feel today, because people reading this are all giving me such amazing comments. Like telling me what an inspiration I am, how strong I’m being and how positive I am. People are approaching me at work and telling me how much they are enjoying the read. How could I let people down by putting this out there?
But if I didn’t write this particular part of the story, I wouldn’t really be speaking my truth would I? I wouldn’t be telling you my story as it is.
Today I am not OK. Physically I’m OK, albeit a little tired. However, today I’m having my first real “why me?” day. I’m furious, I’m resentful and I’m scared. I don’t really know what’s brought it on. Possibly the fact that Dave and I were talking about my first appointment with an MS Specialist next Friday, and I’m terrified. I’m not entirely sure why. They can’t tell me anything worse than what I already know (I don’t think), except that maybe they need to give me a lumbar puncture so that they can work out what medication I need.
It just feels that today, all them questions and statements are coming out. You know the ones:
“It’s not fair”
“I don’t deserve this. Nobody deserves this.”
“Why me anyway?”
“How did this happen?”
“Did I do something wrong?”
Today, I can’t believe that I have MS. Perhaps I’ve been living in a place of denial for a while and today I’m finally seeing it. Or maybe I have been seeing it all along, but today I’m just having one of those days. It’s all part of the journey though I guess.
I asked Louise earlier “why me?” Do you know what she said? “Because it will change you and make you an amazing person.”
How awesome is she?
Anyway, after an epic cry, a big cuddle with Dave, my favourite for tea (pasticcio if you’re interested) and a few more wise words from Louise, I feel a LOT better.
Sometimes all you need is a cry to put everything in perspective (and to put it in a blog post).
N.B: I feel better having written this. To the point that I almost didn’t publish it. But I really did feel like this just half an hour ago, so it’s going out there, warts and all!
All I could do was wait for an appointment, and in early August I got the letter that I’d been waiting for. Not a Hogwarts Letter (because we all spend August hoping it’s our year, right?) but a follow-up appointment for the 11th September, back at St Paul’s Eye Unit.
As the date rolled around, two days before Dave and I were due to fly out to Athens for two weeks, I almost considered not going, as my eye was more or less (I’d say about 95% ish) back to normal by then. It didn’t cross my mind that there would be anything underlying.
In terms of the progression of it, it had probably only continued to get worse over a two to three week period, remained as it was for a week or so, then got better within another two. I don’t think things were “wrong” for more than six weeks.
My Mum spotted the connection. Six weeks was the same duration as my “dizzy periods” four years earlier. She suggested that they might be linked, but I told her I couldn’t see (I know – I’m so funny!) how they could be.
Mum’s are always right though aren’t they?
Out of morbid curiosity about what on earth had happened, I decided to go to my appointment.
It was for 1.45 in the afternoon and I was called in for a couple of initial tests really quickly. I passed the ones I had failed so miserable just two and a half months earlier, with flying colours. My vision was back!
My high spirits didn’t last too long as I waited for an hour to be taken back in for a field vision test. I had to stick my head in this white box thing and click this device that they put in my hand everytime I saw a little light flicker – it could pop up anywhere. Then I was sent back into the waiting room.
After a lot of sitting around, I was finally called in to see the opthamologist at 4.15 pm. My high spirits at passing all the tests had long gone – I was really mad that I had an appointment time but still had to wait 2.5 hours to see someone.
He was very apologetic for the long wait that I’d had and started off by asking how my sight was now. I told him that I felt that was about 95% there.
He then told me that they’d diagnosed what had happened as Optic Neuritis. He explained that it was nerve damage to my eye. The myelin sheath was damaged which in simple terms meant that if you liken your nerve to an electric cable, the insulation had worn away. My eye was short circuiting!
The good news was that my body, being the amazing thing that it is, had repaired it, but I was told that 95% is probably the best that I’d ever get. Sounded good to me! I could live with that.
The thing is, he wasn’t done. Finding what it was, wasn’t enough.
They wanted to know “why?”
He asked me if I suffered from mood swings. I said, no more than the average person (all the while thinking it was a stupid question after he’d made me wait 2.5 hours), and that leg tingling question came up again.
And then he changed my world.
“We need to send you for more tests. We think there is an underlying condition and that condition that we’re looking for is MS.”
I must have gone into shock. I was still so happy that my sight was back, I may as well have just asked if I could have fries with that!
He asked me what I knew about the condition, which was probably about the same as anyone that has had little to no contact with it.
I knew of two people with the condition. Both in a wheelchair. Both people suffering badly. The kind of people where a hint of sympathy, or perhaps pity, enters people’s voices when they’re mentioned.
Surely that wasn’t going to be me?
I told the doctor the extent of my knowledge and he told me not to compare myself to people I knew. The prognosis for me was probably quite good as I’m young and active. Plus, medicine is advancing all the time.
I said thanks to him and left. The second I walked out of his office, everything that had just happened hit me. It was so hard to hold it together until I could make it out of the hospital.
Then the floodgates opened. Despite how incoherent I was through the tears, I immediately called my Mum, followed by Dave and then Steph, my manager. Distraught does not even begin to cover how I felt and I don’t think I’ve ever cried like that in all of my life.
Somehow, in spite of all my tears, I made it to the train station and back home. When I got there, Dave had already done loads of research, and his words were “don’t worry. We’ll get through this together.”
It’s difficult to describe, but the use of the word “we” suddenly made everything easier. He was in it it with me and I wasn’t alone.
He has been the difference in all of this. He’s my strength. He’s the one who catches me when I fall (literally). He’s the one that comes to my appointments, and he’s the one who listens to, and comforts the tears.
I could have done it without him. I’d be selling myself short to say I couldn’t. But without him by my side, I don’t know if I could remain as strong as I do. It would have been far more of an uphill battle.