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Hellie's clinical trial adventures part two

With handwriting like that you should have been a doctor

In a new blog, a person with MS chronicles her journey taking part in a clinical trial for the drug bexarotene. In part two of Hellie's Clinical Trial Adventures, Hellie goes to the hospital for tests to check she is eligible for the trial - and doesn't get lost for once! 

Woohooo, when you live with cog-fog it’s the small victories you know. The fact that I could find my way back to the department of research at Addenbrooke’s, a place that last time I went up there, the people at the desk didn’t even know where it was, "Where the heck is level 5?". But yes I aced it, and with a smug face I sat down in the waiting room to take step one on this clinical research adventure.

I saw Professor Coles again this morning. It’s funny because I have seen him speak at some conferences for work and he is very good, so it always feels a bit like "Oh you are famous" the two times I have met him in person now.  The weird world of MS when celebs are suddenly not actors and musicians. . . But he is a very nice man, and always makes sure to ask me if I have any more questions. You feel like you are in safe hands with him and Karen, the research nurse, who has also been great at replying to all my emails and questions.

So today there was to be blood taken, some EDSS type tests, you know the “push against my arm", "touch your nose", "is this blunt or sharp?” type tests. It was all OK apart from the sight test where letters started to jump around a bit. I think this was due to my varifocals rather than MS, however. I turned 40 last year and boom, I suddenly needed varifocals. Congratulations Hellie you are now middle-aged for real!

First of all I had to sign and initial a lot of papers, fairly straightforward stuff checking that you understand the trial. Things like:

  • what I am meant to do, like eat a healthy diet and so on
  • that I will donate blood to research.
  • that I can stop the trial at any time, and also that they can stop it at any time
  • that my GP will be informed about the participation of the trial and any findings from tests
  • that I am not allowed to become pregnant during the trial

All fairly obvious things, no hidden surprises like signing off your first born to medical research or sitting in a small cage with only a giant-sized hamster wheel to keep you entertained. After having my ridiculous signature laughed at a bit (this always happens, every time. It is really bad, always has been, I always get the joke "Oh with handwriting like that you should have been a doctor”) I was ready to go for my tests.

Again this was all fairly standard, I don’t particularly like having my blood taken, but then again, does anyone? The EDSS stuff is all fine, if slightly annoying, but as far as tests go, they are fairly harmless.

Then I saw Karen the research nurse again who told me that if all bloodwork comes back ok, I will come up for my baseline appointment on Tuesday next week. The stuff that would stop me from taking part would be things like a blood test showing liver or kidney failure, and hopefully I won’t have any of that anyway! So I am waiting for the all clear email, and then the next step will be a full day of more tests at the hospital next week: MRIs and visual evoked potentials. The last time I had the latter was 11 years ago when I was going through diagnosis. Not looking forward to picking the glue out of my hair from the electrodes, but on the plus side you can pretend you are a super villain in an old sci-fi film when you are having the test done. In fact, I am quite disappointed with the amount of MRIs I’ve had that I haven’t managed to get some special powers from it. Stop watching to many superhero shows, you say? Well, you might be right, but come on, it is boring being stuck in a MRI tube, so the idea of popping out with some superpowers would be quite good.  Sadly I don’t think this trial comes with any super abilities, but with the amount of checks that I'm having done, I should have a good working knowledge of what my body is doing. Like a monthly MOT!

So how did I feel after the first day? Well obviously I am not on any treatment yet, so can’t report anything there. My fatigue was very bad last night; getting up earlier to catch a train and having to fast before the tests was difficult. I am rather moody without my coffee so having to be civil to people early in the morning was hard work!  

It was stupidly hot yesterday too. The heat isn’t great for my MS and I ended up feeling rather knackered and dizzy most of yesterday, so when it was bedtime I was very ready for it. Except it was too hot to sleep! But that aside, the visit was all good. Hopefully I will get the all clear and can start the next leg of the journey.