I still can't believe I have had 47 infusions!

So much has happened since Tysabri first came to market. I think I have forgotten more than I remember about it all, and it's not from damage to my myelin anymore!

I was cleaning out files yesterday and I have this walloping huge Tysabri file with articles and studies and news reports and letters, etc. I just moved it to TWO thumb drives and my computer is blazing speed now!

It's sort of like I am now, as compared to pre-Tysabri. I'm still slow when I overdo, but it's NOTHING like I was before. My brain files are open and clear and running at a speed I never thought I would have again.

Thanks Ted Yednock!!

Happy 2011 everyone

I missed infusion #41 last Friday because of a headache I can't get rid of I think I'm getting a sinus infection but, I'm not ready to begin antibiotics yet. So I'm waiting to see what happens. I didn't want to have an infusion when I wasn't sure what was causing the darn headache. I have appointment next week with my neuro as well as my primary. If the headache isn't gone and I still feel congested I may begin antibiotics. I know the headache was originally caused by allergies but I wish it would either decide to become a sinus infection and I will begin antibiotics or just go away...LOL I think both my neuro and my primary will tell me to begin antibiotics if I still have the headache next week. BTW, headaches due to sinus congestion are common for me so this isn't a new symptom. I just don't know if it's an infection and I can usually tell.

Tomorrow will be 6 weeks since I had the JCV blood draw. I still haven't received the results I know my neuro wants me to stay on Ty regardless of the results of the blood draw because I'm doing so much better on it than I was before. Does anyone know of anyone who tested positive and chose to stay on Ty???????? My neuro did say I could take a few months off if I want to if I test positive. I just don't know what to do. At least I'm not experiencing any withdrawl symptoms from not getting my Ty fix last Friday but it hasn't even been a week. Ty has been wonderful for me!!!!!!!

I caught up on everything that has been happening by reading the posts of Ty part 2. Thanks for all of the info It really helps to know I'm not in this alone and that I can always count on someone here to help find the info I'm looking for.

BTW, Eddie, my wbc is slightly elevated since I began Ty. But, it's so close to being normal that the drs and I have decided not to worry about it.

hugs,
Shayna

I just got my test results....I'm negative I'm doing the "Happy Dance". I've scheduled infusion #41 for this coming Friday. By then I will have seen both my neuro and my primary and I'll know whether or not to begin antibiotics. I've had so many sinus and ear infections that taking antibiotics for them does not stop me from having an infusion. However, feeling crummy because of a darn headache does mean no infusion because I do get side effects from my infusions.

Thank you everyone for listening to me worry and complain about trying to get the darn test in the first place. 8 months is a long time to wait for a blood draw. and, that was a long way to go for one but it was worth it

hugs,
Shayna

YAY!! That's great news shayna !! I am still waiting for results and it's been 7 weeks and yes, I've called a few times

Fri I will get my 52 infusion. I waited 6 weeks this time, seems to be o k...
I have fought hard to stay on Ty when 2 neuros wanted to "make" me stop. My life has been better, progression has halted. I am very thankful for this med

RW, thanks for starting part 3

Linda

Shayna, that's awesome!!! I am so happy for you!!

Congrats Shayna! Finally received my Stratify 2 paperwork last week. Hope to get tested soon (and get results relatively quickly) as I'm now over 4 years on Tysabri.

Thanks Komokazi I hope you receive your test soon. Is there somewhere close to home that you will be able to have the test done????? I had to travel to Fresno, California to have mine done...but it was worth it!!!!!!!!!!

It's amazing to realize that some people have been on Ty for 4 or 5 years. You're an inspiration to all of us

hugs,
Shayna

Thanks Natalie. It was such a relief to finally receive the results and learn that they were negative. Now I can just continue with my wonderful Ty and not receive pressure from family members to take a break. I'm really looking forward to #41

hugs,
Shayna

Grammie, I hope you receive your results soon and they are negative!!!!!! I hope we all test negative!!!!!!

I've tried waiting 6 weeks between infusions. I found it hard not to have them every 4 weeks Good luck tomorrow.

hugs,
Shayna

hi all - I just got my 6th tysabri infusion; it's my first one since I found out I tested positive for the JC virus.

I was diagnosed 3 years ago and had 2 relatively minor flares with just sensory symptoms but had a pretty major post-partum flare for most of 2010 that peaked with swallowing problems and other scary stuff in the summer.

As a longtime HIV/AIDS activist, I know people who have died of PML (it was still relatively rare but more common in the days before effective anti-HIV drugs, when people became very very immune suppressed). I'm staying on the drug for now, but will be looking for alternatives at the 1 year mark or so.

I still have (maybe permanent) peripheral neuropathy in my feet and legs from the flare, and get my first MRIs since starting tysabri in a few weeks.

I'm wondering if anyone has ever seen statistics that look at women who had their most major or only flare as a post-partum one, and how many of them continue to experience major flares and/or progress to SPMS, and how many go on to not have flares if they don't have other children??

JD