Monday, January 08, 2007

Monday at last!

I just spent five minutes looking for a cell-phone that was actually hanging 'round my neck. Doh!

I overslept till 8:45 because I surfed till 1am this morning. So I phoned the neurologist as soon as I woke up. Amazingly, I got to speak to him directly. He sounds very nice and on the ball. Anyway, he explained the basis of the trials to me (which I did already know from having read all the related articles).
He enquired whether I have had cortisone recently, and I told him I had, on the 20th of November. He said that they initially have to do screening, and can't do it until at least a month after me taking cortisone. Which is fine, but not if I take it now again. His receptionist is going to phone me for an appointment. I hope it is soon, as I can't hold out indefinitely without taking the medication.
He also said that I can't be over 5.5 on the disability scale if I want to partake in the trials. I explained to him that ordinarily I am safely under 5.5, but with my current relapse I'm finding it a bit harder to get around. I need to be able to walk at least 100m unaided. I can still manage this, unless I'm having an exacerbation. But they need to make that appointment soon.

The good news, is that they won't be doing invasive tests, such as lumbar punctures. The pharmaceutical company actually wanted to, but Dr said he thought it was unethical on trials. Yay for him! Otherwise I wouldn't have been interested.

So now I'm waiting for the phone-call to tell me when I should come in.

If I do get on the trials, I will be having loads of free M.R.I. scans, which would be interesting. Also, they are going to pay travel expenses of R150 each time I go to be evaluated. Please hold thumbs for me that I get on these trials. The way I understand it, the trials for safety are basically over. This is just a bigger trial so they can assess benefit and get FDA approval.

On the flipside, I have plenty of motivation to go on my juice-fast. Starting today. I have mentioned before how this delays a relapse, so better that I get to it. Then I can stretch the meds till after my evaluation, at which I apparently need to be quite perky.
Also, next Sunday is my nephew and godson's first birthday party. I would really like to be there, and able to walk, too, thank you very much.

So I wait in anticipation to hear my fate ;-)

Other than that, I will keep up my daily swimming, which can't hurt, and I'm going for another ionization detox on Friday (have to find out what the actual name is, lol)

Also, finish the Gavotte that I'm busy with on the keyboard. Not nightclub material, certainly, but as always I find myself drawn to the classics.

3 Comments:

Blogger the not so "new" mom on the blog said...

I have just spent the last 30mins reading your posts - WOW!! I really do admire you!!!! Happy belated birthday - just love the pic of you and your new keyboard!!!! I will keep everything crossed that can cross in the hope that you make it onto that program!!! Take Care and send my love to my other cuz - Michael!!

2:48 pm  
Blogger mdmhvonpa said...

"The good news, is that they won't be doing invasive tests, such as lumbar punctures. The pharmaceutical company actually wanted to, but Dr said he thought it was unethical on trials."

Above all else, do no harm. Glad that the medical profession still understands this oath.

9:09 pm  
Anonymous Anonymous said...

I would love for you to be here at Zander's party. I will obviously understand if you can't though. As you know Tommie, he will cater even if you definitely say you won't be here ;) He is always worried about what you can eat. Good guy that.

9:03 pm  

Post a Comment

<< Home