February 3, 2009

The end could be closer than you think

Or could be closer than you expected and hoped... The Avonex that my neurologist put me on for the MS isn't working, and he is now planning on switching me over to Tysabri. It is the *BEST* medicine that they have out there right now for MS, the problem being that it is also the most dangerous. It has claimed countless number of lives, as somewhere in the treatment there is something that also triggers Progressive Multifocal Leukoencephalopathy (PML) in patients. PML is common for people who have AIDS. According to the National Institute of Neruological Disorders and Stroke, as many as 5% of people living with AIDS develop PML. The mortality rates for those with HIV-PML are around 50% according to most reports.
However, the report goes on to read: For non-AIDS individuals with PML, the prognosis remains grim; the disease usually lasts for months and 80 percent die within the first 6 months.

Yes, there are other choices for medications, but only 3 more besides the Tysabri. The issue is that the other medications are just like the Avonex in terms of how effective they are in treatment, and the side effects which is why my neuro doesn't want to switch me to one of those, as they are all extremely similar. The other plus side to the Tysabri is that it's a once a month infusion via IV. No more daily/every other day/weekly shots to worry about... And no more having to worry about feeling like shit for 1-4 days a week from my MS treatment.

Now none of this is to say that I will definitely end up with PML, and of course I pray to God that I don't, but to be completely honest, I am a little bit scared. I mean... come on, I'm only 25! I've always joked around that I don't want to live to be old because I don't want to be a menace on the road, or annoying at the store, or anything like that, but that was only in joking. I've posted bulletins before along the lines of "If I were to die tomorrow, what would you say to me?" and while I had pondered what I would do if I were to die tomorrow, I never really thought of it as a possibility so I never put SERIOUS thought into it. I've had a lot of things going through my head since my appointment this morning and I'm trying to straighten them all out. I'll be posting another blog, or possibly sending out e-mails to say the things to people that I've wanted to say but was too scared for whatever reason (either too afraid to hurt someone, too afraid that person would be mad at me, too afraid to speak the truth, etc.)

I'm sure there are people out there that wouldn't agree with me going through with this and putting trust in my doctor. Hell, even I don't trust doctors most of the time, however, I'm looking at it like this:
If I'm supposed to live until I'm 90+, then I'll live until I'm 90+ whether I'm on this medication or not.
If I'm supposed to die when I'm 32, then I'll die when I'm 32 whether I'm on this medication or not.
The Tysabri is 50% more effective than the other treatments for MS, so if I can stop having the symptoms I'm dealing with on a practically daily basis and slow the rate at which new lesions are appearing on my brain and spinal cord, then I'm going to do it. I will take my chances and live my life, because at the end of the day, my life is all I have to look back on.

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