I'm like you 4boysmom. Not a lot of symptoms either. But I have 9 lesions and some black holes. So yes, I worry about the future sometimes. I did read a story about a woman who was diagnosed with MS after she had bought her dream home. It had 2 floors -- she sold it and bought a one story home because she thought she might be in a wheelchair and unable to use stairs. Well many many years later she was still walking and regretting she had sold the dream house. I think it is good to plan for the future but also probably good not to overplan so much that you don't live your life to the fullest.

General questions for everyone:
1. How often does your neuro do an MRI while you are on Tysabri? It's standard to have one at the 6th month mark, right? (I just had my 6th infusion). What about after that one?
2. At what point did you all get tested for the antibodies? I think I got panicky after Monday's infusion that I was having some kind of reaction that typically suggests antibodies (nausea, fever, dizziness--at least according to the Tysabri insert). Has anyone developed antibodies further down the line? I think I had the test at the 3 month mark -- never heard anything so I assume everything is ok.

I've had 8 infusions, and my neuro has not even mentioned an MRI or the antibodies test. I did have bloodwork done at 3 and 6 month mark. The blood I gave in October, the neuro said it was absolutely perfect! So, he didn't seem too worried about my chills and such after infusion.

Natalie,
I had an MRI right before I started Tysabri, one at the 6 month mark and one at the 18 month mark.
I have bloodwork every three months, but I haven't had the antibody test, asked about that yesterday, and my doc said that he doesn't test for antibodies unless the patient has some sort of negative reactions and then it would be done at 3-6 month mark. Transient reactions are reported during the first six months by a lot of folks who are on it, they either usually smooth out or get worse and when they get worse, then you look into antibodies. If there's some sort of reaction later after long term infusion history, he would look into it immediately.

Your neuro may feel that since everything seems to be going along ok except for the chills and stuff, that you don't need an MRI. You may also have restrictions on your insurance since both are VERY expensive. I know my insurance doesn't have any restrictions, but I have an old plan and it doesn't have any restrictions because it is a full service plan, and not an HMO or PPO or Comp Care or Managed Care, so I get them when he wants them with no problems.

OK...now for my report!

NUMBER TWENTY ONE DOWN!!!
In and out in record time of 2.5 hours. No problems, no concerns.
The nurse and I sat and talked about how I am doing. She reports they have 7 Tysabri patients now! There have been a few that came and went but never 7 at once having infusions!

Stopped by to see the doc. I was supposed to have an appt after infusion, but I was there early in the day for testing for something else and he had called my house while I was in the other thing, so I just invited myself up . He said my MRI was wonderful, blood work came in just lovely, gave me a copy of MRI report "to frame", told me don't come back later, and off I went to infusion.

MRI report: NO new lesions, NO enhancing lesions, Further decrease in large lesions previously reported on, some are gone COMPLETELY! Nothing new to report!
Bloodwork: All levels normal, nothing to see here. Normal WBC count means you are clearing Tysabri as you should, liver panels normal, now get out of here.

( I'm pretty sure it's working now...)

I wasn't too worried about the MRI part, because I've had them yearly in March. I figured after a year on Ty, that would probably be when he wanted me to have another done.

My next appt. is in January, so I'll just keep on keeping on!

That is so so great!!! It put a big smile on my face today. (I was reading this on my I-phone as I was waiting to give blood at the MS clinic).

After my second Tysabri infusion I had new MRIs of the brain done. Also, no new lesions, none enhancing, and some had disappeared since the MRI done in May of this year.

Just had Ty#3 and having some pain in the lower back but I had that after number two and more fatigue than normal right now. I have high hopes for Tysabri!

Yippee!
Weebs

Yay for the no new lesions, no enhancing lesions and especially for disappearing lesions!!!

Glad to hear it's happening so fast for you!

Thinking on the lower back thing, how's the kidneys? No UTI's brewing, I hope!

Let us know how it goes!