'Ty makes me feel better' How?

[Chowda]

I thought there wasn't really meds to relieve symptoms long term, all meds try to make getting worse slow down.

I'm just confused on what people mean. If the dizziness and eye sight can get better that would save my life.The other 1000 I just deal with.

[KatieAgain]

In my case, I went on Tysabri because I was in a major flare with some of those "MS Complications". It stopped the flare.

But what I think happened is I was in itty bitty flares and it stopped that too. Did not realize how bad I was until I started feeling really good. I started remitting on a lot of issues. Am I 100% better? No, but I am at least 80% better and my quality of life increased ten fold.

I have dizziness and eye issues too. Did not help the eye issue, but did help the dizziness. And if you are not on Valium for that dizziness...ask your neuro for some. That will hopefully relieve it and low doses will not make you drowsy after a couple of weeks.

I really like TY. But with all that said, they might make me come off it. It's not PML. But I am going to leave that for another thread because I am too upset about the possibility of going off this drug and not feeling up to talking about it.

[lindaincolorado]

Hi Chowda, Tysabri gave me energy/stamina, better balance,less fatigue and great MRIs-it did not help my foot drop.. My QOL greatly improved progression halted

From what I understand Ty stops T cells from crossing the blood brain barrier which stops the attack of ms. This give the brain/body a chance to heal itself... and for many it does-some more than others and some not at all but, still stops progression and then there are some Ty reacts negatively to them.

I am a very grateful Tysabri user for over 7 years

[lindaincolorado]

Hey Katie,
I had 2 neuros who were going to take me off Ty-one at about 8 months and the other about 30 infusions. I changed neuros! I will get #91 a week from today I have been at the RMmsC for 2 1/2 years and there have been a couple other neuros in the middle

I am sorry you are going thru this ..
Linda

[AFCC]

This is a great thread. I am about to start on this as my Nuro Doc said this would be the best thing for me. I will say I was a little nervous went we started to talk about PML and how this drug came off the market for a bit.

[Chowda]

Thanks for the input guys.
A support nurse for Ty told me I may feel better because it stops flares, so that it may put a lot into remission.
That's great news!

He also told me that I will likely feel sick for the first few months :\
Since my neuro said not to start injecting interferon for a month, it's not worth it, I'm assuming feeling sick won't be as bad.

I dunno guys. Of course I'm scared of PML, but my neuro only started the works on this when I tested -JCV.


This is my first med. I know Ty says it should only be used if other meds are ineffective, but this is what my neuro says is best to start.

Kind of speaks of how bad I got it
But I'm happy there's progress!

[dyin_myelin]

It is my first line of defense as well, although my neuro says I am the healthiest person she knows of that is taking it. A small, unreasonable part of me so wished to go back to 100%. I think if you are reasonable in your expectations you will be pleasantly surprised by small improvements.

Before I started I couldn't multitask at all. Now, I have the radio on when I drive, and I think about other things and talk to other people. It is a small gain. I am walking normally but I still have sensory issues in my left leg. My libido is shot, and I suspect I don't fully empty my bladder. I still stutter and grasp for words intermittently.

The depression and mood swings are horrible. I have crying jags, urges to self-harm, and images of hanging myself from my fan. However, I just tell myself over and over it's the MS and/or the Ty and a respite is on the way.

I don't always feel that I have a lot of energy, but I can get a good momentum going. When I first started the difference was very noticeable and I helped my neighbor sand and paint the mullions on the second floor. The bathroom flooded the entire first floor this past week so I grabbed a mop and helped the maintenance worker clean it up. A parent actually said, "I wish I had your energy." This was three hours post infusion, I still had the neon pink strechy bandage on (getting splashed with cholera).

[dyin_myelin]

Oh, forgot to mention which was huge, L'hermitte's disappeared within the first week of treatment which I don't think was coincidental and huge. I hated making a slight head movement and getting reminded that I had MS.

[KatieAgain]

The depression and mood swings are horrible. I have crying jags, urges to self-harm, and images of hanging myself from my fan. However, I just tell myself over and over it's the MS and/or the Ty and a respite is on the way.

Dyin- Please let your doctor know about this.

[dyin_myelin]

Dyin- Please let your doctor know about this.

I am afraid she will yank it out of my arm.

[misslux]

Chowda, good luck on Ty! So glad that you have treatment lined up.

Don't be afraid of PML as you are JCV negative. Plus you'll have excellent monitoring at the clinic!

[Chowda]

I'm really happy things are starting to fall into place. An OT is going to drop by soon to see what can be done.

And I won't be getting infusions at SMH. The Ty rep found places closer. So I'll be going to one at Neilson & Finch. CML is in that building and a CML in Ajax does my MRIs. Maybe they do infusions too. But the Ty rep said it's a place well versed in infusions.

But I see my neuro march 13 at SMH. In May I have an MRI appt there at like 5am :S

I dunno, everything that's happening now. It's all good news! And I'm in remission. And unlike the last one its been a few weeks now, not days like the last one.

Oh and I saw your post on nail clippers, I so need those Denco ones that you got. My mom works for a pharmacy so they're just ordering some to stock and the pair for me

[KatieAgain]

Chowda- I am glad things are lining up for you. I ditto the don't be afraid of PML...you still will for the first few infusions, but if the TY kicks in you will be feeling right as rain soon and I think you will worry less. You need to kick that progression in the butt!

Dyin-I am right there with you as far as being afraid the Docs are going to stop TY on me for other reasons. I am sort of depressed myself at the thought, but I am not going to hang myself from a fan. I don't think TY is causing the self hurt thoughts for you. It might be the MS but I don't think it is the TY. You are new at this, you want a baby, lots on your plate. Darlin' you need someone to help you through all this besides family or friends. I can tell you are still grieving and that is O.K. Completely normal. You will be doing yourself a big favor by seeking out help. I am in your corner, as many of us are here, but you got to help us out a little. You and I started this TY journey together...that means we are "TYed at the Hip" and we have to finish this race together.

[misslux]

Oh and I saw your post on nail clippers, I so need those Denco ones that you got. My mom works for a pharmacy so they're just ordering some to stock and the pair for me

You will love them!

Keep us updated on your infusions, etc.