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Archive for March 2008

Ponderings on Fingolimod etc.

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I feel a bit blah.

Did I mention how I thought that the steroids I was given three weeks ago weren’t up to scratch? Maybe old stock, maybe got left lying in the sun somewhere while in transit? Whatever the reason, it doesn’t seem to have interrupted my relapse the way it should have. I am now left with the dilemma of taking some more (which is a bit dangerous, considering the last dose was so recent) or waiting it out a bit. Waiting is also scary, as the longer inflammation occurs, the more nerve damage is done, the longer the remyelination/ rehabilitation process and the greater the likelihood of permanent damage resulting from it.

The symptoms are as follows: numb(er) feet/ legs. This is creepy but not debilitating as such. Then there are my hands, which are getting increasingly numb and are in the process of losing co-ordination. This is disturbing, especially the right hand (I’m right-handed) and could influence quality of life. Quality of life is a huge consideration for anyone living with a chronic illness. It is not so bad that I can’t write, for instance, but it might mean the difference between being able to play the piano or not. It’s not that bad, and certainly not apparent to anyone else yet. But it is affecting my state of mind. It’s kinda hard to ignore.

I’m quite convinced that as far as the Fingolimod trials go, I am on the smaller of the two dosages. Phase I and Phase II trials had two dosages of the meds: 5mg and 1.25mg. The results of those trials were that both dosages had the same clinical efficacy, but that the smaller dosage had less side-effects. Now, in the Phase III trials, they have adjusted the trial dosages to 1.25mg and 0.5mg. (They scrapped the 5mg dosage and introduced a markedly smaller dosage to the mix).

So herein lies my theory. I reckon I am on the 0.5mg dosage. It has induced quite dramatic improvement in my condition, and I even went for eight months without a relapse at one stretch. But. I don’t think this dosage is powerful enough to stop my relapses completely. They are noticeably milder than they were previously, but they have not been banished.

IfI get invited to go on the extension phase (which I understand is a distinct possibility) then it is a reasonable assumption to suppose that they may adjust the dosage to what was proven to be the most effective dose. I’m thinking at this stage that it will be the 1.25mg.

Of course, I could be sitting the pot miss here, lol. It is all supposition on my part. But if I am right, it would also explain why I have NIL side-effects. Because I’m on a tiny little dose. Maybe the meds will eventually be available in two strengths. My MS is particularly active, so I probably need a slightly stronger dose. But someone who has a more benign case could perhaps get away with a piddly dose of the meds and the resulting non-existing side-effects.

I guess only time will tell.

In the meantime, I am in a bit of a quandary here. It’s subject to change at any given moment, but at this stage I think I am going to try and wait another week before going back to hospital and taking meds again. Then it will at least have been a month since the last session and my kidneys will have gotten a much needed break. Wish me luck.

Written by Maggie

March 24, 2008 at 11:28 pm

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A day for celebrations

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My niece was born this morning and is  completely and utterly gorgeous.

Her name is Cayleigh (isn’t that beautiful?) and she weighed in at 3.32kg and is 47cm long. She looks just like her mom, my eldest sister, Sonja.

She has quite a head of hair on her, too precious, a little brunette. Her eyes look like they have the potential to be blue, even though  both parents have brown eyes. Bit early to tell though.

I am in love!

Michael and I were asked to be godparents which we gladly accepted. We have so many godchildren already, it’s fantastic!

I really look forward to seeing this little one grow up.

Written by Maggie

March 19, 2008 at 5:58 pm

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Time for an update, no?

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I’ve giving up on posting the photos! I don’t know what I’m doing wrong, especially seeing as I’m doing exactly what I always did when (successfully) posting photos here. Could it be that the problem doesn’t lie with me? No, I wouldn’t be that presumptious ;-p

Katie has tagged me with a meme to blog about five blogs that I enjoy reading. So without further ado, here are five blogs that I have to read every day! (Or everytime they post, whichever comes first). Consider yourself tagged!

It goes without saying that I love reading Katie’s blog. Such an talented and interesting person. The cute doggy pictures don’t hurt, either. But I can’t list her as one of my five. That would be cheating, according to memetiquette 🙂

  • My day wouldn’t be complete without reading of the expoits of supermom (my very darling SIL) and her three boys.
  • Another favourite is my fingolimod chum, Jeri, over at Fingolimod and me. Very informative and just plain cool to read. It is nice to read of her experience on FTY720 and compare it to my own.
  • Then there is the very inspirational Billie, from Micro Preemie Twins. This lady, apart from being totally cool, is also the most fabulous mom to Holland and Eden.
  • Bosom Buddies is another must read, as Capetonian Melanie juggles her work (brilliant charitable organisation called Bosom Buddies, in which she provides support in the form of goodie bags to needy birthing mums at a state hospital), with being a gorgeous mom to her three adorable kids, a wife to Gary, a genuine Christian and a surfing bum.
  • And last but not least, I have a confession to make. I am addicted to the Celebrity Baby Blog. Why I like reading about celeb babies so much I don’t know, but I just do, okay? Between Violet Affleck, Shiloh Jolie-Pitt and Suri Cruise et al, they just add that dash of cuteness to my day.

Obviously I’m not tagging the CBB, but the other four, if they happen to read this are officially tagged 😉

Written by Maggie

March 19, 2008 at 9:43 am

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Photo trouble

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I was having such a lot of fun choosing the holiday pics to post. With much pulling of teeth, I managed to narrow it down to 26 photos. Is that too much for a blog entry?

Anyway, I started posting them, no problem,  but then my sister phoned to hear if I wanted to go visit her. I did, so I went, saving my draft to finish up later.

When I got back, the photos suddenly would not upload at all. There was just that annoying white box with a red ‘x’ in the top left corner where the damn photo should be. Urg!

I’ll try again tomorrow. For now, I’m putting them up on Facebook, so those of you that are linked to me on fb can have a squizz at them there if you’d like.

Written by Maggie

March 14, 2008 at 5:33 pm

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Travel (b)log

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Hello everyone.

Thanks for all the great messages – I really needed that last week.

I ended up having a great time in Cape Town! I forgot how very  beautiful it is there. Even the car trip wasn’t as tedious as it normally is. The rains have been good this year, and I have never seen the Karoo look as beautiful.

I spent last week Tuesday and Wednesday in hospital, mainlining steroids. I had no idea if I would be in any shape to go on holiday afterwards, but I packed my bags on Wednesday evening anyway and told Michael that if I felt all right in the morning, then I would be going with. Well, apart from feeling a bit sleep-deprived after not sleeping in the hospital, I felt surprisingly good. So I went along for the ride, and I’m so glad I did.
As it turned out, I never crashed from going off the cortisone like I normally do. I have some theories on why this is. Primarily, that that particular batch of cortisone was a bit weak. More on that later.

The four of us (myself, Michael and his parents) took a leisurely drive down over two days, stopping at the picturesque little Beaufort West to overnight. The scenery along the way was just breathtaking. I appreciate a good view very much these days. Ever since that time that I had that vicious attack of optic neuritis that made my eyesight so fuzzy, I have not taken the beauty of this country for granted anymore.

Unfortunately, Michael and I slipped up on providing the music. We usually make a special Argus CD each year, but this year we clean forgot about it. With the result that we listened to the same two CD’s which just happened to be in the car, for the entire 1200+ km. We are pretty intimate with those CD’s, let me tell you.

Driving down to Cape Town from the North West province is quite a bonding experience for four people in a car. My fellow travellors were very gracious about stopping in just about every town for me to use the ablutions. My bladder is not great shakes at the best of times, thanks to a nice lesion on my brain, but because I had just had a (not so) healthy dose of cortisone I was obliged to drink a lot of water to flush out my kidneys. Not a good combination with travelling. Still, it wasn’t as bad as I had anticipated and the others were very understanding.

Finally, we arrived in the Cape on Friday afternoon, travel-weary but still thrilled to see Table-Mountain. Actually, M wanted to go up in the cable-car, but the rest of us refused point-blank. Can you imagine how it would have been if we were half way up and the elctricity cut out due to load-shedding and the winch gound to a halt and there we were?!Suspended half way up, half way down. (No toilet in sight 😉 My worst nightmare. Besides, we have all been up it at one stage or another, so why court that sort of disaster.

We booked into our hotel, which was right next to the Canal Walk Mall. Walking distance from a Kauai restaurant. Like Michael said, I was in my element. I think I ate there at least once a day.
The hotel rooms were lovely. Very luxurious, but in an understated way, almost homey. Very nice. With a view to kill for.

By that time, the ‘roids had kicked in a bit and my wobbly left leg was more or less back to normal. It was at about then that my right leg started acting up, much to my distress. How it starts is I get these huge goosebumps, just on the affected leg. That’s the first sign. The next part is when it starts buzzing, feeling like electrical impulses shooting up and down the leg. Then numbness, followed by weakness.
Because I know the pattern, I was none too thrilled with the arrival of the goosebumps. Fortunately, it doesn’t seem to have progressed much from there.I’m hoping that it was just a bit of residual inflammation that had been treated by the cortisone, but was still busy healing. The more pessimistic side of me was wondering if it was perhaps a fault in the strength of the medicine that they had given me. Remember, I had precious little side-effects from it, and normally, I’m half off my head from it.
I’ll give it the benefit of the doubt however and take stock again in a month’s time. That’s normally how long it takes for everything to heal up and remyelinate.
(On the plus side, it just occured to me as I’m typing this that my left hand is way recovered from how it was pre-treatment. So that’s good. Also, the fledgling optic neuritis has cleared up marvellously. I’m going back to the gym tomorrow, so I’ll see how that goes).

I had the best time in the Canal Walk Mall. I walked about a lot, my stamina has increased hugely. Funny how you can enjoy something as simple as walking in a mall so much. There were times that I thought I would never be able to do it again, and now look at me!

On Sunday, it was time for men to do the Argus. My mom-in-law and I stayed at the hotel and watched the broadcast on tv. Conditions were considered pretty ideal, although at one stage they were worried that they might have to stop the race if it got too hot. Fortunately, that wasn’t necessary. Michael ended up doing a brilliant race, especially considering the amount of training he had (not) done. He did it in 4 hrs, which is a very respectable time. My dad-in-law did it in 4.5 and in his age-group within the group he was riding, he came 2nd. Very well done indeed.

Monday morning we said goodbye to the Cape, and that night we slept at the Karoo National Park. I was overcome by how starkly beautiful it is there. Space has become such a commodity, and there is so much spce that you barely know what to do with it. The air is clean and crisp and mountain tortoises walk around like pedestrians. I could very easily stay there for a week. The chalet that we shared with my parents-in-law was pretty luxurious too. Satellite tv and air-cons. And the most beautiful surroundings one could hope for. (photos to follow)

Tuesday, the last eight-hour stretch, and I must say, by then we’d all had it with the driving, especially as the route we were on had no fewer than three road-maintenance blocks! Finally, we got home and it was a welcome sight.

A far way to travel by car for just a handful of days and a cycle race, but a lot of fun to visit one of our most beautiful cities and provinces.

Not so fun to get back into the car yesterday morning to go to Jo’burg to see my neurologist. Because of the fact that I relapsed I had to go for a checkup (very strict trials-protocol) and fill in a ton of paperwork. Very tedious indeed. We were lucky with the traffic, however, so it wasn’t too bad. Now though, I just really want to veg out at home for a while. Phew.

Tomorrow I’ll post some of the photos from our trip, and catch up on some blog-reading, commenting and meme-ing.

It’s was fun to be away, but it’s good to be back.

Written by Maggie

March 13, 2008 at 6:52 pm

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Impeccable timing, as always.

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I can’t believe my luck, although I guess I should have expected it.

Some background info:

I am going to the Cape with Michael for the Argus Cycling Race, which he is to participate in. He goes every year, but the last time I was able to go with was in 2001. So I’ve really been looking forward to it – I love the Cape. And I’ve been feeling so good lately that I thought it would really be a blast. We are set to leave early Thursday morning.

This just in: Relapse Alert!

Yip, it’s official. I am having a relapse. Today being Monday, I have three days to do something about it. Something that will involve a trip to Jo’burg to see the trials neuro and a two day stay in hospital.

Last night, I made the decision to cope with it on my return, next Tuesday. Now I’m not so sure, as it seems to be revving up.

It is non-negotiable to cancel the trip. I have really been looking forward to it, and I’ve cancelled so many trips due to my health that it’s starting to look suspect. Even though it isn’t. So I am going, even if it’s with a cortisone hangover. (Heaven help my fellow passengers, lol) 

There is still the option of waiting till I come back. I am trying to gauge the rate of progress here. It’s quite slow, as always, and a week shouldn’t make too much of a difference. But on the other hand, it’s just going to be an extra week’s worth of remyelination that I’m going to have to work on. I’m leery of that by now.

And if I don’t treat before I go will I really enjoy my holiday that much, with the worry at the back of my mind the whole time, and the constant monitering of symptoms. Probably not.

The relapse is fairly mild, and not noticable at all from the outside. It’s basically just a creeping numbness on the left side of my body, especially my foot (that only recently regained a degree of feeling), my leg and my hand. What is spurring me into action is that it affecting the motor control I have in my hand. There was already a degree of damage in my hand prior to the relapse. If I use it too much then it starts acting up in a big way. So I’m really not prepared to sacrifice any more. This rehabilition process is too hard.

I’m thinking I should book in tonight and get my gram of solu-medrol. Then I’ll have till Thursday morning to recover somewhat. 

Written by Maggie

March 3, 2008 at 5:27 pm

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