I've had 66 Ty infusions.How many have you had?

[stand alone]

I had 2 but then severe allergic reaction rushed to ER

[golfore]

Thanks Kimba and Seasha',,,

The ball is rolling,,,,,,

[Seasha]

Hi golfore and LL60 - I notice that golfore has the email listed, so LL60, if you are still having problems, maybe you could just email golfore to get the ball rolling. Good luck!

[LL60]

At 1:40 Pacific time I did it all again.

[golfore]

Have been trying to do it for about an hour. I'm not having any luck.

LL60, I haven't been able to find your email address either.

Kimba, I followed your instructions but it doesn't seem to work for me.

[LL60]

Thanks Kimba, I did it.

Golfore, please try again.

[Kimba22]

Hi golfore and LL60,

In order to add your e-mail address to your profile (as this is purely optional), it must be manually added. Only logged in, registered members can see it, and you can remove it at any time. Please follow these steps if you wish to do this:

Click on UserCP (1st item on the left in the dark blue bar under the MSWorld logo)

Choose Edit Your Details

Scroll down to Additional Information. Type your email address in the URL field

Scroll to page bottom and click Save Changes. (You must click Save Changes in order to add this information to your profile).

Hope this helps!

[golfore]

LL60,
I haven't been able to find your e-mail on your profile. I told you I was stupid.

I don't see a place in my profile to add one. Oh well,,,, my story is complicated.

[lindaincolorado]

Hi LL60, I live in a large city now-not when I changed neuros. For the ms specialist I drove approx 100 miles each way, then when I quit her I traveled 50 miles each way for the neuro who then wouldn't give me "my med" I did find another neuro in that same small city.

[LL60]

I checked on my "page" and my email address is in there. So do feel free to email me. I am usually on my computer in the mornings Monday - Friday.

Linda,
I admire your changing doctors. Do you live in a large city where you can do that? I may go with a different insurance when I turn 65 and wonder how I will choose a new doctor. If we change, it will be AARP and I will be able to go where I want. But I know for a fact as far as "MS specialist" go, there is only one is the area and he is north county. And he has already told my own doctor that he would never keep someone on Ty with high titer numbers, so he is out!
I have a couple of years yet, but do wonder.

I wasn't happy with my doctor the first couple of years, but since I had little choice, I just tried to work with what I had, and I think we are finally a good "team" together. He understands that I do my research and although he may know about MS, I know about MY MS

[golfore]

I think PM is private message. I think I can send you one. It will not be meant for anyone but you.

I'll try later or tomorrow. I have a difficult time typing. I'm old and stupid and not with it.

Later, golfore

[LL60]

golfore -

I hate to sound old/stupid/not with it - but I have no idea what you meant by PMing me?

If it doesn't involve cleaning my house - I'm all for it!

[lindaincolorado]

Hi golfore,
when I had been on Tysabri 7 mths my ms specialist told me she was taking me off the med-she was on a power trip I found a new neuro! Then when I had been on the med for 3 yrs this neuro told me that he would not give Ty past 2 yrs-no jcv then, only info was that chances of pml were almost nil till on it past 2 yrs-I changed neuros!

I have now had 93 infusions About 6 mths ago I became jcv+ not much over .2 but, "they" consider me positive. I am a grateful Tysabri user and hope I don't have to give it up unless there is something better.

Best wishes

[golfore]

LL60, thanks for the response. I am going to PM you in a couple of days. Let me know if you don't want me to.

My situation is complicated.

TY,
golfore

[LL60]

Very good question golfore.

My doctor isn't completely for me staying on Tysabri, but we talk about it at each visit. Because of the high JCV numbers, there is one oral pill she will not prescribe for me, and I can't take any of the injectables. He told me once that he didn't really know how MS affected me on a daily bases. So, I went home and wrote out how MS and affected me and all the changes Tysabri has given me over the pat 5 years. At my next app. he thanked me very much and said that gave him a much clear picture on why I was willing to take the risk. He just asked me to please come in more often. I pay big bucks to see him, and was always pushing it out to the 6 months the TOUCH program makes you go. Now I see him every 3 or 4 months depending on how I can get an app.

I feel like we are partners in this. It has taken me years to feel this way with him. We both feel right now that no one really knows what the numbers mean. Risk is higher, but just how much higher?? Both of us keep looking for information on this. He met with an MS specialists though the university and this doctor told him he would not keep a patient on Tysabri with numbers like mine. I just told him, "Glad I'm not his patient!"

The only thing we have decided for sure - if my numbers jump up, we will stop the infusions. So until that happens, I go to my infusions every 28 days and enjoy the hell out of life!

A short answer for you might be to change doctors. But rather than that, I would just talk about the whys. why did he refuse to continue a treatment that was working? HE may not have wanted to take the risk. And hopefully that means, that he cares about you as his patient. PML is not a pretty thing. It can mean a lifetime of fighting seizures and great disability.

I hope that whatever treatment you are on now is helping. I am in the process of greatly changing my diet, because I feel that if I do every have to stop Tysabri diet will be my only answer. And some nice side effects of changing my diet have been some weight low and lower blood pressure and a touch more energy. That's something I always fight!