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Update on trials

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I know there’s been a shameful dearth of posts from me lately. My heart’s not really in it at the moment (because I’m a facebook addict?). I think up posts in my head but don’t get around to actually writing them.

But because I had a scheduled trip at the neuro yesterday, I thought I’d better update, as I did promise when I started the Fingolimod tials to give regular updates.

Yesterday was completely exhausting. We left home at 5:45am, and only got back at about 7:45 pm. A looong day. I was prodded and poked all over, had to undergo an MRI scan, a lung-function exam, eye-exam, give blood, give urine, have an ECG done, was timed over a 25m stretch to see how fast I could walk it, had to hop on one leg, then the other, do mental arithmetic and memory tests (not at the same time as the hopping, fortunately), put pegs in  holes, got asked personal questions – and that’s just the highlights! lol. Holy cow! If these pills weren’t working so well for me, I would have given the whole thing up long ago. Add to that the traffic we had to sit in for hours, and it all adds up to quite a hectic day. I’ve been dreading it a bit, to tell the truth, but at least it’s over now.

Michael – now that man is just worth his whole weight in pure gold! I owe him BIG for driving me around, without complaint, the whole day. Unspoken, I know that my recovery on these trials makes it worth the hassle for him. If you get right down to it, that is what love is all about, don’t you think? The grand gestures of romance, the chocolates (especially the chocolates!) the flowers, and lovey-dovey simperings  are one thing. But when it comes to the crunch, true love is about being there for each other, come what may, and doing it gracefully and gladly. That is how I know I am loved.

Aaaanyway, the neuro was very happy with my progress and lack of relapses. (I’m going for five months CORTISONE FREE on the 27th!) I think I am one of the early success stories of the trials. I was among the first three to go on the trials at that particular centre. I think the recptionist and doctors were quite impressed when I sallied in there, without even groping the walls to stay upright. See – progress. I still scored a 4 on the EDSS. Although there has been a lot of improvement, the test is not subtle enough to change to a lower score based on that. It is better than the 5. I had when I started on the trials, however. I’m hoping for a 3.5 or a 3. when I go again.

I was able to hope on my left leg a solid three times, compared to the half a jump I gave last time. On my right leg, I managed one. Probably would have done more on a second attempt. I could balance with my eyes closed for way longer than my previous personal best of one split second, ha ha. I managed a good couple of seconds. The mental test went well, with a score of 100%. I get so stressed with that test, lol, because I’m scared if I let up on my good track-record it will be tantamount to having ms-induced brain damage. The doc said it’s the first time anyone got 100% on the test, but I think he’s full of it because he says that every time. Probably says it to everyone, to mitigate the indignity of having to perform like a trained seal for medical research.

Lung-function was  normal, MRI got sent straight to Switzerland, so neither I nor the doc got a squizz at it, it’s purely for the trial administators’ benefit. ECG was normal. The visit to the opthalmologist had a pleasant surprise. I’ve noticed that my eyesight has improved a bit – I can actually make out subtitles on tv now, without my glasses on. Well, the eye doc said my left eye has definitely improved. Yay!

Other news – I’ve lost all sensation in my feet. Well, it wasn’t news to me, I did have an inkling, lol. But it was the first time the neuro came right out and said it. Normally he just scribbles things in his book. He had the tuning fork thingy out again. I felt the vibration strongly when he placed it against my hands, but not at all when my touched it on my feet. I do feel hot/ cold and pinpricks but apparently (I asked) that is a different path in the brain. Oh well. why would I need to feel with my feet? Oh, wait a minute, that’s right – to drive! Damn.

I found it a lot easier to get around this time. I walked up the steps of the medical suite without holding onto the handrails (big milestone, ha ha) and up the ramp at the eye-doc’s place without a glitch. I’m becoming quite independent, aren’t I? 🙂 Plus, it’s not an issue if we get a parking spot that’s not right next to the entrance. I can walk comfortably across the parking area without being exhausted. What a change!

So that’s about it in a nutshell. I’m stable on the drug and even slightly improved. Viva Fingolimod! Plus NO side-effects. What more could a person ask for? Oh yes. A cure.

I understand they are working on it, though, so let’s all send out hopeful thoughts to the boys and girls in medical research.

If anyone reading this has MS (which you probably do, if you’re still reading this) and would like to know more about the Fingolimod trials, please feel free to ask me.

Written by Maggie

August 15, 2007 at 5:51 pm

Posted in Uncategorized

3 Responses

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  1. I don’t have MS but I was still reading … yes I read right to the end!!! You are a very brave girl … and yes you have a wonderful husband. Glad it went as well as it did yesterday. And its really good to hear that you are so positive!!! Keep it up!!!

    Thanks for the update – it was very informative


    August 16, 2007 at 8:12 am

  2. “We left home at 5:45am, and only got back at about 7:45 pm. A looong day. I was prodded and poked all over”

    Are there any fluids or organs left in your body that have NOT been sampled!


    August 16, 2007 at 4:37 pm

  3. I’m glad to read about your experience! I’m in the phase III trials as well. The one where it’s either one dose or the other of Fingolimod OR you get Avonex. I’m pretty certain I’m on the Fingolimod as I don’t have any side effects either. I sure hope this stuff gets approved because I’ve never felt this good myself.

    Best of luck to you! I’m bookmarking your blog, so keep posting. 🙂

    My Blog:


    November 15, 2007 at 3:19 am

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