It's been a while! I had a bad flare last fall (October-December). I can't do IVSM, so we tried a couple of medrol dose packs. Of course they didn't do any good. Finally started getting better toward end of Dec./beginning of Jan. The last couple of weeks, I've had something weird going on with my eye. My vision has been varying between a little blurry to pretty blurry, but it's been straightening itself out. I saw my eye dr. a week and a half ago and then again this past Wed. and it had changed significantly. In fact, the latest appt was b/c of some new symptoms I've been having.

I woke up a week ago (last Sat.) with my vision blurrier in that right eye and my depth perception was off. Of course, I was pretty off-balance and nauseous. Saw the eye dr Wed., then my neuro Thursday. It seems they think I have a mild case of ON, along with some other sxs that put me in another flare.

I'm not on any DMDs b/c of bad reactions to Avonex, Beta, and Copaxone. The subject of Tysabri has come up before, but my neuro and I decided that I just wasn't to the point of a serious discussion about it. He did suggest that I think about it when I saw him Thursday. The reason being the two flares I've had so close together and the one last fall being such a doozy. He's worried about permanent damage now. He said maybe think about getting on it until fingolomid gets approval.

I've spent last night and today reading those 2 whopper Tysabri threads. Thanks to all of you who've shared so much info! My question is really are there specific questions I should ask my neuro that I may not have thought about? Thanks so much!

***ETA: I also meant to ask for opinions as to whether you would consider going on it for a short amount of time? My neuro said it might be the thing to do until fingolomid gets approved. What do you think? Thanks again!

Jennifer

Hiya Jennifer!

Ask what tests will be done for monitoring. Most of us have blood work and liver function tests done every three months or every six months.

Ask when you will have the next MRI. They usually want one after the first six months.

Ask what the procedure is if you have a problem outside of the infusion center and if he will respond asap or leave you hanging.

It's an easy procedure for me, go in, get the infusion, get monitored for an hour, and then out the door, blood work every 6 months, MRI after the first six months and then one every 12-18 months unless there's a problem, which there hasn't been in my case.

Please let us know how it goes and good luck!

Howdy. My 6th dose of Ty will be Tuesday. The first few days I had mild Rebif sides but I took Copaxone up to 2 weeks or less of 1st Ty infusion because i was falling off cliff. Well I still am, just at a large parachutes pace. So It does help, but not curing me. My left eye sees 2 images slightly shifted. Right is almost perfect. Right side of bod below eyes pretty much is whats effected more then left.

LDN as others mentioned maybe? Thats one i'll look into. Ive read (and especially you youre female) about the estrogen estriol. My last neuro appt was cancelled because I had FDA fax him IND form to legally scrbe estriol. Estriol is what I really really want to try. Affraid of cancer is he? Well im affraid of losing my arms to ms so?? Some people

Hi Jennifer. Well, in my opinion... Ty doesn't seem to work for me, however thousands of people are benfiting from it. The thing that I do like about it is that I am not getting any of the yucky symptoms that I had from the CRABs. I am concerned about PML, but like Eddie said, I am more concerned with not losing the use of my body. From what I understand, Ty works amazingly well for ON it is one of the first noted improvements. If it works for you, than obviously it is worth the risk. I would say try it for a few months and see how it works.

Thanks for these great ideas! I've copied and pasted them into a list I'm going to email to the neuro's office.

Thanks for sharing your experience! I'm pretty worried about PML. I had such bad reactions to the 3 CRABs I was on, I'm just afraid that something like PML would happen w/the tysabri. Pretty irrational, I know, considering the chances of it happening, especially with short-term use, but that fear is still there.