Here comes the future…

Today I saw my neurologist.

Today was the day that would decide my future, and that it did.

I got to see my brain (yes its amazing, truly) I saw all the ‘activity’ which is a very odd feeling, seeing something that in a way you feel but not really. The lack of control is also scary.

Then I got to see my face from the front, under my skin. Also incredible, if a little creepy! The radiologist had made a comment on how my optic neuritis hd got worse.

I knew this.

This made my recent eye test all the more pointless. I had a low visual assessment at the hospital as I have complicated eyes. He gave me a prescription for two pairs of glasses, neither of which do anything as my sight differs from each day, so the likelihood of it being the same as it was that day is like, 10%. Pointless.

I was given my options. Then the percentage of each treatments effectiveness.

I made my choice.


A monthly infusion, a fairly new thing, also one reserved for people who have more activity, like myself.

Special I guess?

It comes with its own complicated risks, which is long winded and I am too tired.

I need a blood test to test for this virus thing, my blood will be shipped to Denmark! So although I have never been abroad, parts of me have!

Then if I have this dormant virus its up too me whether I still go ahead. Which I will.

I will ignore the fact I heard the word, death. I will be fine.

So that’s the story, just hope it happens fast so at least it can stop anything else happening to my body.

Here’s to my new normal.

Wish me luck.

8 thoughts on “Here comes the future…

  1. aw babe, I’m glad you’ve got some kind of resolution though, no matter how hopeless things may feel at times, there still could be things out there that could make such a difference… sending you lots of luck, love and good vibes 🙂 xxx

  2. I have had Tysabri for 4 years and it works brilliantly. I have the virus but take a test every 4 weeks and are kept a close eye on by the neuroligist:) You’ll be fine and get your life back. I did:) Glad you finally chose a medicine. Looking forward to hearing how you’ll get on.

    1. Thank you! I am excited and scared. Did you have any side effects at the start? I know it won’t fix some problems but I know it will help loads xxx

      1. I have had no side effect . My relapses which I had every 6-8 weeks stopped straight away which meant my body finally started healing. My resent MRI scans are good and I only have permenant damage in my right leg but can walk short distances with a my stick. I stopped being tired and feel fine. I have had 3 relapses in 4 years. They were a lot milder than before I had Tysabri. I’m very happy to have it and my only regret is, that I didn’t start a year earlier on it when I was offered it just after my boy was born. But we were moving to Denmark so couldn’t really get my head around it all. I do know how you feel.

        Have a lovely weekend:)

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