circles circles – starting all over again

I am a perfectionist – no matter what I do, 100% is not enough. Never satisfied with anything under 120% and angry if I fail or miss. Seems my MS is the same.
EXACTLY 2 months since my diagnosis I am back to square one. Admitted to hospital as I felt physically unbelievable ill for the past 2 weeks. On top of that, more or less my entire body is gone, hardly any feeling left but the worst bit are the headaches…well, if you are another lucky MS follower or someone with cluster headaches or migraines, you can imagine how I spent my days…

I got admitted to hospital again – I am back in Amsterdam/ Netherlands and now patient in the university hospital, the VUmc as they have a fantastic MC Center and I am more than satisfied with the docs, staff, procedures etc.
They didn’t want to give me any steroid IVs on my first day (yay,actually a good thing) as they wanted to get new MRIs done first and compare them with my MRI of 7 weeks ago.

Well, I can tell ya, that turned out great…not.
At least I got no issues with getting the MRIs taken, today we needed 45 min, good old brain and as much of my spinal cord as possible.
I loved the fact that, for the first time ever during a MRI session, the team told me via the speakers what they are going to do next and how many mins it will take and just in general everything else they do while I was in the machine. ( As I am a geek and engineer by heart, it was also a Siemens one, but I think an older model, bigger than the one I used in Germany, sounds were different as well as imaging quality πŸ˜‰ )
Both docs, the neuro on duty as well as my future neuro (one of the MS specialist here) took their time to answer all my questions and even sneaked me into the crash room as I wanted to see the MRI images myself. Again, they took all the time to explain the pics and we compared them side by side with the ones taken 7 weeks ago.
Good news: Spinal cord is all clean except the spot in my neck which is also still active
Bad news: Brain went up from 8 spots to a “starry night”, you would need to spend quite some time counting them:(
All of that within 7 weeks, no wonder I don’t feel anything, I am like a flare up bomb.
Another possible good news – he wants me to be part of a study I heard of in Germany, but I guess it is all over the world, the Rebif plus very high dose of vitamin D…can’t hurt plus they ll keep an even closer eye on me πŸ™‚

My neurologist is not a fan of the IVs but said in my case he would recommend it – he made clear that I am done with it for a while as I now have my 2 steroid IVs which is in his opinion the max intake for 12 months. They are very careful with it in NL, I only get 3 days/ 1000mg which is the Dutch standard compared to 5 days/1000mg I got in Germany ( and a success rate of zero…)
Took 5 painful attempts, 2 docs and 1 nurse ( all tried their luck, but the nurse won!) till they got in the needle. IV is tiny but takes forever, about 3h today – missing “German efficiency”, they made twice as much run through in 1h max πŸ™‚

Didn’t sleep for 2 nights and decided to ask for a sleeping pill last night – pah, fell asleep very close to midnight just to be wide awake by 3 AM – that worked out well πŸ™‚ Decided to write my blog instead as they weekend will be quite busy with visitors and, yay, my mum booked a flight and will visit me for 2 weeks as of Monday. Can’t wait!

Still keeping up my head and thinking positive, wish I could just break down a bit but can’t, it’s just not in my system. When the neurologists closed the door to tell me the MRI results, I could see the fear in their eyes, that this might become all very dramatic. I made a joke and moved on. I used the chance to gather all info I could possibly get as my most important task/personal job as of now is to be my own health manager, I am the CEO/ CMO of my health and my life, Anja inc.

I even tried to squeeze out a tear late last eve – all that came out was a very loud laughter. Should watch a sad movie for my next attempt. Not giving up on crying yet.

I am a perfectionist.

One thought on “circles circles – starting all over again

  1. Hi Anja,
    Reading your blog, I just want to say you are showing incredible strength through it all. We’ve met only once and as such don’t know each other very well. It is an inspiration to see that despite the MS you are still so full of life. It puts us ‘normal’ people to shame.

    I’m not a religious person, but will pray that you get well soon. /Fong

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