Anyone ever had the lower leg, ankle, and foot swelling as a TY side? I've had it my left leg-foot (mod bad) and rt leg-foot (not very bad) since my 2nd day after infusion. It started to go down a little yest, I think b/c I am due for next infusion on 15th. Just hoping it does not get any or much worse with next. Heck, if it does I guess I'll wear bedroom shoes LOL.

BTW-I think my 3rd round of antibiotics is kicking in. I'm very hopeful I can make the 15th infusion date. I've been this ill b4 and for longer then this.

I am remain and will remain very pro TY! This drug works on my MS. As I come closer to my infusion date, I see what it has done for me. I can see exactly where it stoped my sx and exactly where they came back a few days ago (as expected). My sx now are not as bad as b4, but new. It's hit my eyes. mouth... If it were not for TY, I have no doubt these new ones would have hit harder then now weeks ago and remained. I do belive we need it every 3 to 3.5 weeks, but that has yet to be approved.

I want to thank everyone for hanging in with me, giving me their best advise and support. I know I have been hard on you guys. I've just been sick as heck and scard. Please keep your fingers crossed for the 15th - maybe I had better ask you for a double cross. Everything is going to be fine.

~Sheena~

Just wondering why many of you ended up on Ty?

Copaxone didn't work for me with side effects, history of depression rules out A and B so I think my specialist will say Ty (that's what my local neuro thinks, but, wants the hopkins okay)

Since stopping copax I had a "honeymoon " period and then went downhill. I'm having a relapse and am doing the best I can.

How long does it take for Ty to "work"

Thanks, Carrie

Just thought I would update you all and let you know I have an appointment at the ms center at Barnes Hospital in St. Louis on Friday. They had a cancellation so I snatched it up.

I was wondering if anyone has had hot flashes and periods of freezing as a side effect of tysabri. I thought the hot flashes were just hormones ( I am 51), but every afternoon I get really cold (cold chills) and have to cover up with a blanket. Can ms cause this??? This has been going on for a few months.

No idea, we are both in that who can tell age. But, yes I have had the same and did not have it prior. I really had given it no thought ref ty, until your post. Now I have looked at ty sides again; I do not see it referenced. My guess is we are both in that stage. In the end result - who really cares about such. You , I and thousands of othets are fighting for our life with ty.

Carrie,

I do not know how long it takes for Tysabri to slow progression. I have had many "doses" of Tysabri juice and I am not sure yet if it has done anything. I will draw my final conclusions after my 25th dose (about this time next year) unless I have some adverse reaction to it.

I hope that it works for you.

The reality is that we will never know if it is working because we have nothing for direct compairson (i.e. you on Tysabri vs you not on Tysabri). The best that we can do is look at averages within the Tysabri population and between all other DMD medications.

It is a statistical problem no matter how you look at it.

The good news is that more people are reporting good results than are reporting bad ones.

Do whatever is best for you. Try it for a year and decide if it appears to be helping. Then decide on what to do next.

I have attached my "progress" graphs below to give you an idea of how it is working for me.


-Vic

Attached Thumbnails

 

Hi Carrie!

I started noticing small improvements after my second infusion. I kept my mouth shut in case it was all just subjective hope.

After each infusion I would notice the small things that just kept improving, sometimes just because something that used to bug me would be gone and I would realize that it hadn't bothered me in a few weeks.

At the 6 month mark I did my own assessment, had a neuro appt., MRI and vision screening. At that point I had the clinical proof to go with what I was feeling. I will have my 13th infusion on April 24th. I have another neuro appt and MRI coming up before my one year anniversary in May.

I cannot WAIT to see the results of the upcoming MRI. I expect more improvement!

The 6 month MRI showed no new lesions, no enhancing lesions and the largest lesions( 12-14 cm.) either reduced in size or gone. My vision screen showed no damage to my optic nerve, it was healthy and pink, my eyes were back under MY control and my 2003 prescription for glasses for nearsightedness was back in effect. No nystagmus or oscillopia was noted as was in previous exams. No more vertigo, no more eye getting stuck in position when I looked left. My quality of life has improved. My fatigue has lessened. My stiffness and spasticity continues to be a problem, but nowhere near as bad as it was.

I was scheduled for my first infusion when Tysabri was withdrawn from the market in 2005. I hadn't been on any other MS therapy since diagnosis in 9/2004. I went on Copaxone while waiting for Tysabri to be returned to market. It did nothing for me. I had serial relapses and ongoing problems.

I got on Tysabri as soon as I could after it was returned. So far, so good from that point on! It may not work for everyone but it worked for me!

[
I appreciate the info. I'm going downhill and can't wait to start ty. I have a lot of cog, sensory, vision and some balance issues. Everything is bouncing in me-from my toes to my brain...feel like i'm on a bad trip...if you know what i mean.

that was soooo hard for me to type, carrie

Lots of good stuff coming through the wires from the AAN today!

Just a taste of what's being reported:


http://www.reuters.com/article/healt...AS778120080415


More will be forthcoming as the confrence partcipants release their abstracts and studies.

Just an update:

I had my Ty infusion on Monday and all went fine at the new infusion center. Thank goodness for small favors . I haven't had a chance to read anyone's posts, so I hope everyone is doing okay .

Glad to hear it went smoothly! Hope all is well with you and your family situation. Let us know how you are doing when you can get to a PC.