Tuesday, January 20, 2009

correction

I have been corrected by 2 people that I don't know....that I am misinformed about Tysabri.  Apparrently, I was confused about who has died and who was just given the "fatal" news that they have PML...
Honestly, I am pissed that anyone that I do not know-would give a shit about what I think about Tysabri.  This is the opinion of a person who has been through more shit in the last 2 years than most people go through in a lifetime.  My opinion was not solely formed from reading "misinformation" on the internet- it comes from being raped by the infusion center at $430.00 a month.  It comes from having to have my husband take a day off from work so that I can get my infusion, and then come home and sleep because I feel like hell.  It comes from no doctors caring about the other symptoms that I have, but feeling free to have a license plate that says "CRISIS" on their Porsche.  I am tired of sitting on hold with drug companies- begging to get help with all of my copays, and always being told no.  I spend hours every week looking for solutions...DRUG COMPANIES hold my family by the balls! And I am sick of it.  I am sick of choosing between getting my medication or getting my kids new shoes.  I am sick of all of the stress and worry that Tysabri has put on my family.
Doctors "practice" medicine.... so you dopes that have been brainwashed by your doctors and drug companies need to remember that even though the statistics on Tysabri say there is a less than 1% chance of getting PML and/or dying- I am going to make sure that I dont get hit by that Tysabri bus, and get off at this stop.
People that do not know me personally- do not leave shitty comments.  You may leave your little =) at the end of your bullshit comment on someone else's horrible story of their life.  
Honestly, I cannot comprehend why a person with MS would be such a jerk to someone else with MS. Hope you both find someone else to harass.

2 comments:

LISA EMRICH said...

Kim,

I'm sorry that you were 'corrected' in the comments section. I went looking for the comments but found nothing and can only imagine that you deleted them which is perfectly fine.

I could make an educated guess as to who left one of them, but the only I'm not sure. There are some very vocal persons who have Google Alerts on every mention of Tysabri on the web and that's how they monitor what is being said.

The choice of an MS drug (or not to take any MS drug) is personal and one which only you, your spouse, and your doctor can make. And anybody who tells you that you're making the wrong choice is.... well, wrong.

I hope that getting your B12 levels up will help make you feel better. By chance, have you had your Vitamin D levels checked as well?

My vit D tested practically non-existent in September and I've been taking very high supplements and have begun to feel better. That is also a deficiency which is common in MSers and which can cause symptoms to increase.

Hope you feel better soon.

komokazi said...

Sorry if my comment to your previous blog added further stress/upset to your life. Dealing with MS on a daily basis is difficult enough without the extra pressure that comes from making and paying for expensive treatment decisions that could have serious side effects. I wasn't trying to say that what you feel isn't real/correct. It surely is. You have clearly made the right treatment decision for you. I was just trying to clarify information for others who may surf by looking for Tysabri user experiences.

Chris