Wednesday, December 21, 2011

Tysabri Talk Tomorrow

Well, tomorrow at 11 I go to my neuro's office to talk about Tysabri -- and if I agree to it, then we will plan my first infusion. I'm pretty dead set on doing Tysabri... I've done a lot of research... and being JCV negative.... I really don't have any worries about it. So about the mess up w/ the tests... they ran it wrong the first time & that's the results I was sent to my phone. My neuro called the lab and had them run it the RIGHT way, not once but twice... and it came back negative.

I'm just a bit worried for the fact that I'm not on any medication right now... and I'm sick. So I know my immune system is firing up trying to fight off whatever it is that I have. If I don't feel better by tomorrow I'm going to call my PCP and schedule a appointment cause I can't be sick, especially at Christmas. I laid around a lot yesterday & today because my body just doesn't want to move right now... not only from me being sick... but because of the constant weather change we are having here in Texas.

I went to the store the other day & I used my handicapped parking pass because I was having a really tough time walking & again I get snide comments about me using my "grandmas parking pass".... like really, I don't use it unless I absolutely need it... and whenever I do use it, I get snide comments! Give me a freaking break already... Just because I'm young -- doesn't always mean I'm in perfect health, morons.

I've been keeping my mind off of everything lately with the volunteering I do with MSWorld... but I still can't ignore everything that is going on w/ me right now. I'm looking forward to Christmas though... James and I have everything wrapped  (he had to do a lot of the wrapping, cause my hands wouldn't let me) God love him!

James is taking me to my neuro appointment in the morning & then we are going to the store to get me some feel good food lol. Yesterday was a tough day at the house... it was the 4 yr anniversary of my mother-in-law passing away. It's so hard... I miss her so much.

Oh, I didn't go my urologist appointment yesterday -- I have to reschedule, because I could barely even move I felt so bad. So, I will be calling tomorrow to re-schedule that appointment. I really wish I could of gone, but what can ya do... when you can't move, you can't move.

I feel like a crappy mom -- my kids have been living off of take-out lately because I can't get up to make them something to eat. This being sick thing is draining me and making things even harder than they were before I was sick. But this too, shall pass.

Well, I'm going to call it an early night, I will update everyone tomorrow about my appointment w/ my neuro.



  1. Have no shame Ashley, playing this MS game. Believe me, it sucks. Like you said, "This to shall pass...!" And it will. Keep your chin up and give James a hug for me - he seems like a great guy. =;~)

  2. hey ashley, my name is gary pena, i was nervous to start tysabri also, but i did it, 3 and a half years ago,an i have never had 1 complication, before i started it i was on rebif, an every time i did a mri my dr. would tell me u have new lesions, since i have been on tysabri i have not had 1 new lesion, so good luck

  3. Ashley... Felt good to read your blog above I now didn't feel alone ... it is as if you were in my head... I have been off my meds for about 3 weeks and starting Tysabri next week. I also am sick and feel it became worse quicker than is should have. Had an set back with MS and had to do 5 days of steroid infusion last month then finished the Copaxone and nothing since. I have heard from many people good.. great things about Tysabri. Each person it at different amount of time on this medicine 5 months to 7 years.. this made me feel much better... Just found your blog and very glad I did... good luck