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A trip to the neuro’s (quick Fingolimod update).

with 2 comments

On the 4th of Novemeber, M & I hotfooted it off to Jo’burg for the second last of my scheduled trials visits. I can’t believe that my two years are almost up. Early February will mark my last visit and will include the whole ritz of tests, including the MRI scan, the PLF, eye exam, dermatologist appoinment, EDSS, EKG. Sjoe! I am not looking forward to that.

After that, I will start on the open label part of the trials. I am hugely excited about that, because then I will finally know exactly what I am on. And because I am still having relapses, it will be logical for the doc to put me on the 1.25mg dosage. I remain convinced that I am currently on the 0.5mg dose so am eagerly anitcipating how I will fare on the  higher dosage. I’m hoping that it will banish relapses altogether from my life.

This last trip was a pleasant surprise. I expected just to give some blood and have my vitals checked but ended up having my EDSS checked. The tests felt so much easier than they were at first. And it reflected in the score.

For the first time since starting on the trials, I am a 3.0 on the scale. Initially, I was a 5.5. The increments on this scale require rather a vast improvement to budge. I never expected it to have dropped, because I haven’t noticed such a difference. The improvements are still there, but aren’t as glaringly obvious as in the beginning stages.

I asked the neuro what it was that had made the difference since the previous time when I had been a 3.5. He answered that it was the improvement in my balance. Such happy news for me.

What a difference to when I went for my first appointment there. Michael had to park the car so close to the door for me, because I tired so easily. My balance was abysmal, and I remember staggering into the consulting rooms, trying to look as though I could walk 200 meters unassisted, as that was the prerequisite for going on the trials. I had to walk so carefully to avoid falling, and hold so firmly onto the railings of the stairs.

Nowadays, when I go there, I can actually walk up the stairs to the entrance without using the railings. I can walk confidently down the passageway to the doctor’s rooms and once there, can hop on either leg like a pro and do the toe-heel thing 😉

I can’t put into words how fantastic this makes me feel.

There is nothing on earth, materially speaking, that can make me as happy as what the vast improvement in my health has made me.

It is the fundamental thing in all of us. I know it is a phrase that has been overused, but without our health we really don’t have much. It is a pity that we have to be sick in order to learn to appreciate it.

Written by Maggie

November 16, 2008 at 11:51 pm

Posted in Uncategorized

2 Responses

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  1. The toe heel thing and the hopping on one foot is what I refer to as the “Hokey Pokey” part of the neuro exam… put your left foot in, you put your left foot out, do the hokey pokey and you shake it all about…..or is this a North American reference that you are not in on?


    Shauna MacKinnon

    November 17, 2008 at 1:13 am

  2. Ha ha, that is spot on, Shauna! We are quite au fait with the Hokey Pokey
    here in Africa, lol.


    November 17, 2008 at 9:56 am

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