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.

5 thoughts on “My MS Story (Part 11)

  1. Thank you so much for sharing your MS story. You could not be more correct, MS is not the end of the world, it is just a new beginning! That positive attitude will carry you through these difficult times. Always make sure you put yourself first and do what is best for you and never forget that you know your body better than anyone else!!! Sending you lots of love and comfort!!!

    Liked by 1 person

    1. Thanks Alyssa! I’ve not shared this part of my story yet, but I saw my specialist the other day for the first time..it was a bit of a shock in comparison to this appointment I’m talking about here. I have got loads of lesions on my spine. I’ve had it a lot longer than any of us thought. They actually do want to treat me aggressively and I think I’m looking at Lemtrada. I’ve got another week or so to make a decision, but I think that’s going to be the right option for me xx

      Liked by 1 person

      1. Oh girl I know how hard this can be, but take your time making decisions. Luckily, whatever you decide to take for the MS you are able to change if it does not work as well as you would like! Lesions are so evil and try to take over our lives. I have a ton of lesions on my brain and spine, which if I am being honest scares the heck out of me. Try to do what you can to stay positive and as stress free as possible. Stress is a HUGE trigger for relapses, which I am sure you already know! Please always remember that you know your body better than anyone else and you are in control of your body, not the MS!! Also, please know I am here for you if there is anything at all I can do. I know how sensitive the MS subject can be and it is so hard to talk about.

        Liked by 1 person

      2. Thank you so much. It’s just such a minefield at the moment. So much to learn and understand and like you say – such huge decisions to make. I’m staying pretty chilled fortunately which is the main thing xxx

        Liked by 1 person

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