Tag: autoimmune

Life after the diagnosis of MS

The diagnosis didn’t really feel as life changing as I expected it to. It was a relief. Don’t get me wrong, I knew that I was in for a tough time over the coming months, but that confirmation made me feel better, not worse.

I started this blog soon after my diagnosis, and just writing it, regardless of anybody actually reading it, was more therapeutic than I could ever have imagined. Getting my story down gave me a sense of clarity in my mind, beyond anything I could have imagined.

If there’s one thing I knew that I wanted more than anything though, it was for my diagnosis to not be in vain. I wanted good to come from it.

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I’d been in touch with Pete since I’d arrived back from holiday. Pete is someone that I’ve followed for some time on Twitter, as a fellow Wigan Warriors fan. We had met on one occasion, just a matter of months before at the Post Office. I didn’t make the connection that it was him. He held the door open for me and as I passed through I noticed that he was wearing his work uniform, which was incidentally for a rival company to the one that I work for so he stuck in my mind. Later that night I received a tweet. The awkward “was that you, or wasn’t it?” tweet that I’d sent myself on a couple of occasions!

So why was I in touch with him?

Well, he is the chairman of Wigan MS Therapy Centre. His wife Karen, also has MS. I knew about the centre as he talks about it regularly on his social media. He works seemingly tirelessly to raise funds for the charity. A number of people had mentioned his wife Karen to me since getting diagnosed – plenty of people in the rugby community know them, and everyone has such amazing, positive words to say about them both, but Karen in particular. I could see what people mean – they always look like they’re having a whale of a time in their Facebook posts!

How inspirational is that?

A few weeks back, Pete had shared a post asking for volunteers to help out with some bucket collecting for the Centre on the Saturday before Mother’s Day at the Big Tesco near us (is it just me that refers to them as ‘little’ and ‘big’ Tesco?!) As Dave was having a nerd out at Comic Con in Liverpool, I was at a loose end and volunteered myself for a couple of hours.

Always got my eyes closed in a photo..bloody useless!

I’m so so glad that I did. Finally meeting Pete and Karen, and other people in my shoes was a breath of fresh air. Being around people that “get it” is something I completely under estimated.

I’ve also finally gotten around to visiting the Centre (which incidentally Dave’s brother, Mike, has recently done some work on the roof of). It’s awesome! There’s an accessible gym for those who can’t workout with ease at a regular gym, as well as a therapy room. You can get a great variety of treatments such as Swedish, Indian Head and Hot Stone Massages, Aromatherapy, Crystal Therapy, Reflexology, Reiki Energy Therapy and Hopi Ear Candles. I’ll tell you now – I’ll definitely be getting involved in this!

Most importantly, during it’s opening times, there’s always a brew and a friendly face around for a chinwag! I can definitely see me spending more time here when I’m off work in the future 🙂

Today, is a good day!

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:

“Bring it the f*ck on!”

My MS Story (Part 11)

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.

My MS Story (Part 10)

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.

My MS Story (Part 7)

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!

Optic Neuritis explained

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.

My MS Story (Part 3).

The next time I got a taste of a relapse, though I didn’t know it at the time, was around about July 2016.

I was in the midst of my Body Coach phase. I was in Cycle 2, which involved GVT, or German Volume Training. On this particular day, I was squatting. 10 sets of 10 at 20kg was what was ordered by Mr Wicks, and that I was going to do.

I was hitting it pretty comfortably until my 8th set. My legs just went to jelly. I managed to complete my 10 sets but there wasn’t a hope in hell that I’d be following up with 10 sets of 10 walking lunges. Nu-uh. Not a chance.

As I walked out of the gym, I was acutely aware that my legs felt like they were going to give way underneath me, and I seemed to have lost all control over my left leg. It was flapping all over the place like a flag in the wind.

“It’s ok,” I told myself. “10 for 10 is a pretty tough target and your range was probably about 80% there so you’ve probably just over exerted yourself.”

In an effort to right my problems with my leg, I booked into some sports physio sessions. After two he seemed pretty happy he’d done all he can and sent me on my way with a list of exercises to carry out which would aid my recovery.

In my next personal training session, I told Sam what had happened. I was forever telling her about all the weird things that my body did so she probably thought “here we go again!” I never told her these things for her to go easy on me, or to get an easier ride. I just felt she should know if she was training me.

It was on this day that she noticed a weird unexplained spasm in my left leg. As soon as I put any weight into it, it was shaking like there was hundreds of kilos of pressure. Around the same time I was doing a lot of skipping and boxing training in my sessions with her, and I was struggling to hold in my need to go to the toilet which was a completely new thing to me (I’ve not had kids. That’s not a problem for me yet!)

In addition, my whole groin area had that same tingling sensation that I’d experienced in my leg for the previous four years or so.

But there’s an explanation for that isn’t there?

Obviously what I’d done that day I was squatting, was I’d trapped a nerve in my lower back and all sense of anything had been lost. Hadn’t I?

And that’s when I had my first “accident”.

I honestly cannot believe I’m about to share this next bit, but in the spirit of really telling my story and also telling you what MS has been like, and will continue to be like for me, it’s only right I tell you the full story.

If you don’t like toilet talk, look away now!

I cannot explain to you what it’s like to lose control of your bowels at 29 years old. It is terrifying. It is embarassing. It is confusing. 29! This shouldn’t be happening until I’m at least 79 surely?!

I couldn’t stop shaking and it really did upset me. I was hysterical, because to make matters worse it happened in public. Me and Dave were out shopping in Sainsbury’s. I managed to run off to the toilet and I text him asking him to get wipes and a change of clothes and to ask a female shop assistant to chuck it into the toilets for me.

Admitting that this happened (and this didn’t end up being an isolated incident) is not something that’s easy, even now, even with an explanation for it.

Of course, I made all the excuses at the time, even when Dave told me that it’s not normal and I should go to the doctor I brushed it off.

“I’m doing Joe Wicks. I’m on a high fibre diet”

“Ahh I had last night’s cottage pie warmed up in the microwave, maybe I didn’t do it properly”

“It’s where I’ve trapped a nerve. I can’t work out when I need to go because I can’t feel it”

I was full of excuses.

I quickly got very attuned to myself though and managed to avoid too many more incidents. It put a spanner in the works of our social life for a while though because I was so scared of getting caught short again. I didn’t want to stray too far from home and never within a certain window of eating. The fear was very real.

This phase probably lasted for a good couple of months. My left leg continued with the mind of it’s own. Not painful, but certainly irritating.

And I looked bloody ridiculous much to the amusement of EVERYONE. My word how we laughed at me. Two of the people who laughed most have said they feel awful, now we know why, but that doesn’t bother me. I’ve got to find the funny side in all of this. It’s what keeps me going.

My MS Story (Part 1)

I’m still struggling to get my head around my recent diagnosis. I find myself getting on with my life, as if nothing has changed and then I’ll have a little niggle, or the tingling in my leg is more prominent than usual. It’ll hit me. And I won’t cry or get upset but I’ll feel really strange for a while.

I’m getting counselling through our company Employee Assistance Programme. If you’ve got this facility where you work, if you ever need someone to talk to, use it. I cannot put into words how valuable it is!

I’ve opted for e-counselling because for the most part, I feel fine. Which scares me. I have it in my head that I should be “not ok” at the moment. Because I feel fine, I wonder if I just don’t get it. Really I want to just dig into how I’m feeling a little bit to see if I’m in shock, in denial, or genuinely as ok as I feel! If I’m not ok, I’d rather drag those feelings up now and deal with them.

I believe that MS started for me in about 2011. I went to the doctors with tingling feet. They felt like they were freezing constantly. Apart from the tingling, I had no sensation in my feet and I struggled keeping my ballet pump style shoes on my feet. I went to the doctors about this and was told “no it’s not poor circulation” and “no we don’t know what it is so off you go for an MRI”. I never heard the results of that MRI, and because the tingling had more or less gone, I didn’t really think anything of it.

My next memory of anything particularly significant was in October 2013. I woke up one morning with double vision and the room spinning, and no, I hadn’t been drinking the night before. The only way to describe the sensation though, was the feeling you get when you lie down on the bed after a good night out and it’s spinning!

I went to the doctors the next day. My doctor sprung into action, saying he thought I might have had a mini stroke. I got sent to hospital for more tests. I had a CT scan as well as all the blood tests under the sun. I remember walking along the road like I was drunk. It was awful. I must have looked like the local alcoholic.

I usually wear contact lenses, but to help with the double vision I had to wear my glasses and place a prism over my left lens. It looked TERRIBLE and I was so worried I’d end up always having to wear my glasses (something I’d never been keen on).

Before they fit my prism, the only thing that helped the double vision was this patch

After some googling, it was apparent to me that my symptoms were very much like “Labyrinthitis”. I never really got a diagnosis, but I did get my ears syringed and a five week sick note.

(I must just add, having your ears syringed is a lovely sensation and not the slightest bit uncomfortable like it sounds!)

I look so horrendous in this picture because I’d spent about 2 weeks with my head over the toilet. The vertigo made me feel violently sick.

After five weeks off, I went back into work. Everything I’d read about Labyrinthitis suggested that the best thing to do is get on with your life and retrain your brain because it can hang around for months, years even.

At about the six week mark, and just one week into my return to work, I was virtually symptom free. I never got a formal diagnosis and I didn’t need to return for another sick note so that was the end of any medical attention.