Yesterday was D day....

[imrachelk]

Yesterday I was "officially" diagnosed.......starting Tysabri...

[CaroleL]

Finally a diagnosis! Not that anyone wants MS but now you'll get proper treatment. It's a good thing!

Let us know how Tysabri works for you, and how you're doing.

Good luck!

[22cyclist]

I am surprised you are starting Tysabri first, but whatever. I have been on it for almost a year and it has surely made the difference in my progression. I hope it will do the same for you.

Take care
Lisa
Moderation Team

[Torn]

Curious why you are starting with tysabri and not a crab drug or new oral?

[imrachelk]

It is what the MS specialist wants to start with ... something about the amount of lesions I have and the size of one of them - Is there something bad about starting with the Tysarbi?

The doctor said that with the injectable you get 30% chance of no new lesions, with the oral you get 50% and with Tysarbi it is 67% and that I can take it for two years and try to calm everything down

in 2012 I had no visable lesions on the my MRI and this year I have 6 small ones and one pretty big size one.

[22cyclist]

Nothing too weird about it. He is absolutely right it is the best med at keeping relapses away. It just has such bad possible side effects. Hey, what can I say, I take it. As long as you are JCV negative you have a very little chance of getting PML. That is the big bad negative with Ty. The longer you are on it, the bigger your chances get for getting PML. I am sure they went through the song and dance with you. I have been on for almost a year, and am still negative, so I feel pretty good about it. It is about year two when people start to convert.

Anyway, most people consider Ty a last chance drug, not a first line, but that depends on the neurologist. I wish you the best. I really like it. Hope you do too.

Lisa
Moderation Team

[imrachelk]

My doctor said the same thing ... said we will do it for 2 years and then switch to an oral medication ...

He said if it was his daughter or his wife that is what he would tell them to do ....

We test for the JCV and he talked to me about the PML ...

He is worried about my eye and the fact that it doesn't respond to light and my optic nerve is very pale ...

At this point I have had a rough 6 months and I am willing to do whatever he tells me ....

[wendya432]

Good luck on the Ty, I hope it helps! I remember how badly you were feeling and I wish you the best.

22cyclist, if you recall, the OP had quite some bad times with her symptoms. Probably why her neuro wants to bring out the big guns right away.

[imrachelk]

He basically said he wants to "get things under control" - he feels that the lesions came on FAST ... since last year I had zero lesions ...

I really don't understand and it is all very overwhelming to be honest with you ...

At this point I figure he is the doctor and has been doing this for 30 years and I have been doing it for 6 months ...

I know my whole right side is having major issues ...

He said I don't have to be married to the medication ... that if I don't like it we can switch ...

but in my mind if it gives me 70% chance of no new lesions in 2 years - hell I will take it ....

and it is only once a month ... I like that .. this way I miss less work ... and miss less time with my daughter when she gets back.

[bree2013]

Good luck Rachel.

I hope you start feeling much better soon.

[newbie but goodie]

So sorry but glad for you to have a Dx and start treatment. ON is frightening and waiting for answers is so hard! Good luck and I hope the Ty helps. I hear great things about it- people actually looking forward to med days! If I was JCV- I would love to try it.

[mjan]

Good to hear from you again, Rachel. Glad you got a name to all you have been enduring. How do you feel having a diagnosis finally?

Hope your symptoms subside soon and things are relatively "normal" again.

Continue to let us know how you are doing ok hon?

Hugs to you and yours, Jan