I just don't know

[Tomjadg]

10 days ago, I had my 7th Ty infusion. Since the infusion, my legs have been much worse, along with my balance and equalibrium.
I don't dare close my eyes while standing, or my head spins and I feel like I am going to fall over.
Walking is a lot harder.

A week before the infusion, my legs actually felt a little stronger....just the opposite of what most people feel.

i don't know if this is a flare, or caused by the meds (Ty & Ampyra) or I am just getting worse. My MRI's a few weeks ago showed no new lesions. Maybe the ones I have are worsening.

The improvement before the last infusion was at 5 weeks , so I am delaying the next infusion by a week to see if the improvement occurs again.

i don't want to quit Ty, because it might be what is keeping no new lesions.

This just gets so confusing, and could be because of so many veriables.
I just don't know.

Thanks for an ear.

[CasinoKathy]

I too am on both Ty and Ampyra. But I haven't had any bad side effects from either. Sometimes it is hard to say which one is responsible for little improvements.

I am staying on both- Ty for slowing down progression and Ampyra in that eventually help will help with walking, although I know it has helped with some sx.

[poohb3ar]

HANG IN THERE!

bless your !

many times it is hard to decide if sx are side affects, relapse or just normal stuff. sounds like it's being pretty rough on you.

have you asked your dr about it? he/she should be able to tell you which it is and what to do. that's what we pay them for!!

praying that you get relief soon.

take care and God bless ya!

[Tomjadg]

Thank you

No. I didn't call the Doc. I figure I know more about me then he does.
Although I have been treated excellent by him and his staff, he tends to not have a lot of time, and I always deal with the office and they ask him and get back to me.

He is always on time, and the MRI is down the hall. Infusions are in his office area also, and very easy to deal with.

I have to laugh though. When I saw him a few weeks ago about my MRI's, his assistant came in....asked me a bunch of questions and updated the computer... then filled him in in his office (I could hear them).
He then came in...told me the MRI's have not changed...keep with the Ty and Ampyra,and that was about it.

That's fine. I see bad stories about Neuro's on here, and he usually agrees with what I ask for. I'm satisfied.

[lemstar]

I know when I started on Rebif, my symptoms increased pretty dramatically. The doc sort of shrugged. I believe it was bad for me. I stayed on Rebif for about 5 months. I am not on a DMD now.