Maggsbunny

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Nothing’s for sure, but…

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I’d put large amounts of money on a bet that I am, in fact, on the Fingolimod meds. I took pill No.2 this morning, and I have a slight headache in the background. Could it be? I think so! I’m so glad I’m actually on the trials now. I feel much more settled, and I think I made the right decision.

Yesterday was a long day. We got to the doc’s consulting room at nine am. He did the ECG and I had to answer a questionaire on my symptoms, etc. Then the other neuro arrived and we ran through the disbility tests. I scored about the same on everything as last time. Refused to jump on one leg though, which he accepted quite gracefully. I was willing to perform last time, because I really wanted to be on the trials,  but I’m on them now, and it really hurts my back. Then it was off to the medi-clinic to get my first dose. I had to lie there for six hours being observed. I sent Michael off to play a round of golf, which he really enjoyed. I read a good book, that I’ve been saving for the occasion. As I mentioned in yesterday’s post, there was a dip in my heart-rate, which probably means I’m on the good stuff. Yay! I have to go back in roughly two weeks time for a check-up. 

I’m being treated like royalty in these trials. No waiting for the doctor. I’ve got a team of specialists rallying round me, which I am quite enjoying. All free, too. And I got a little gift from the drug company. A stationery set, in a little satchel, and a really cool duffel bag in cream and orange. Love it. Now that’s what I call limited edition. Only people on the Freedoms trials get one, you can’t buy them. Very exclusive 😉

I asked the doctor if Tysabri is available in SA yet. He said it is, at a cost of R18 000 per month. Which is not covered by the medical aids. Not that I can take it, anyway, as it would intefere with the trials, and would be a health risk to me. He said Tysabri is very effective, though, much more so than the inteferon injections. But Fingolimod is looking very promising. He thinks it may be even more effective than Tysabri.

Apparently, there are two girls ahead of me at this specific doctor’s trials. They aren’t experiencing side-effects, except the one is feeling more tired than average. The receptionist told me, though that the one went off her inteferon drugs to go on the trials, and she isn’t doing well, ms-wise. I felt so sorry for her.

As for myself, I am going through a rather good spell. On the 20th of Feb it will have been three months since my last 1gram dose of Solu-medrol. Not bad. My stamina is surprising me. I can walk further than I have been able to in quite a while. Also, my left eye (the weaker one) seems to have improved. During the eye-test yesterday, I could read the same line with my left and right eye. I was very pleased by that.

So, in general, I am doing quite well. I think it is largely due to the ion-detoxes that I have been having. I will definitely keep up with that. I’m also not going to put all my eggs in one basket, and rely totally on these drugs. I am going to keep up with Chi Kung, the positive thinking and healthy lifestyle. I feel quite inspired.

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Written by Maggie

February 14, 2007 at 4:03 pm

Posted in Uncategorized

One Response

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  1. My heart is sore for that girl! Do you know how long she’s been on the new drugs? Maybe it is just her body trying to cope with being off the one type and then onto these? I hope so.

    You look great. Very proud of you

    supermom

    February 14, 2007 at 4:23 pm


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