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-   -   Tysabri Information & Check In (https://www.neurotalk.org/multiple-sclerosis/37891-tysabri-information-check.html)

SallyC 03-23-2008 11:10 PM

Quote:

Originally Posted by lady_express_44 (Post 242276)
While I agree the detailed conversations might be better suited to a separate thread, I believe that the links to those discussions and "new information" should also be found here (in the thread designated as "a place to keep it "together").

Cherie

That is mainly what I meant, Cherie.

Thanks..:hug:

sheena 03-23-2008 11:22 PM

administrative edit

Jodylee 03-24-2008 06:00 AM

Umm...is it just me or is anyone else a little irritated by the bickering on a Tysabri thread?:confused: It would be great if we could have a thread/sticky for Tysabri users and potential users.

I think we all read the rest of the MS information too (hopefully:)). If someone who doesn't fit the above criteria has info or news about Ty it can certainly be posted there.

I do not like having to weed through arguments to get updates from other Ty users about their experiences. I'm sure I'm not alone in this.:cool:

Chemar 03-24-2008 08:15 AM

yes, I am sure it must be very negative for others, especially new members, to come onto a thread meant for information sharing, and instead find confrontational posts

here are our guidelines
http://neurotalk.psychcentral.com/showthread.php?t=1293

specifically
Quote:

Forums Mission Statement

The purpose of our Community is simple -- it's devoted to support for health, neurological, mental health and related issues. In that vein, you should be civil and treat others as you expect to be treated here.
and
Quote:

Inappropriate Content

This is, first and foremost, a self-help support and education community. That means if your message (post or PM) isn't about offering support or information to another person or asking for it, it's potentially not appropriate for our community. Specifically prohibited from our community:

* Flames or messages meant to intimidate or harass others
*
We would appreciate if everyone would respect those guidelines and each other in their future posting.

thank you
Cheri

Harry Z 03-24-2008 08:27 AM

admin edit as quoted post has been edited.

sheena 03-25-2008 07:00 PM

I'm confused. I went to the Neuro today for my 1st visit after my 1st infusion. While there, he talked about TY and expected me to see a ton of improvement asap. He did not seem real pleased with me. I thought I was doing well as I have only had 2 noticable problems related to MS. I mean 2 problems in addition to what I already had. One was a real bad hard pain, tingle like feeling in my hand and the other I don't recall (nothing big). Until I got TY, I was getting worse with more sx everyday. So, this is good right? He expects my mood to be on top of the world, leg better... and fast. Ty is supposed to slow progression; some and I pray me too also see real improvements. However, from what I have read this is usually after a few treatments. Why does the guy expect so much so fast. If I'm wrong, please correct.

The real good news is Lady was correct. I'm really sick now, but not due to Ty. Since I had a cough when I got the infusion, he said I would have got sick anyway. He does not see the need to pull me off. I even told him I got sick a lot compared to others, and he was not concerned.

Take Care

Sheena:hug:

barb02 03-25-2008 09:16 PM

Sheena, I sorry you are sick. Hope you start feeling better soon. I would be confused by your neurologist also. :confused: As I understand it, tysabri is meant to slow progression. Some have seen improvements in their current MS symptoms, but that is not even stated as a possibility in their literature. And usually if there is improvement, I think that is gradual.

I did not notice any changes in my first few months except for perhaps a slight increase in energy. Now I find myslef using my cane less than I did a few months ago. I have had 4 infusions.

:hug:Barb

sheena 03-25-2008 10:25 PM

Thanks so much Barb, you confirm what I thought. This guy is not my usual Neuro so I don't know him at all. Maybe he was just trying to cheer me up as I am sick and took a hard fall last night and walked worse due to pain of injury. Maybe he is just big on TY. Who cares? I just want to have my facts straight and my TY.

Thank you so much for your reply and I am excited for you!! It looks like you may just me one of the lucky ones who improves. I pray you can trash or hide away that cane very soon. GOOD LUCK!!!!:hug:~Sheena~

barb02 03-26-2008 10:19 AM

I am having problems with getting my neuro to order a 6th month MRI. I will have my 6th infusion at the end of April. He says it is not necessary unless I am experiencing problems. I thought they were supposed to order one as part of the TOUCH protocol?

ewizabeth 03-26-2008 10:24 AM

Hi Barb,

I didn't get one until a year passed from my previous one. And luckily, it looked great! :)


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