This Is MS Multiple Sclerosis Knowledge & Support Community

Back to the "apology" how interesting that the society apologizes for putting attention on research rather than considering the emotional issues. That is such a politician position- the un-apology. To me this is just a stratedy to address concerns over the decline in financial support for ...

Hi from Diana in Ulstron. Sydney and I have come to a hotel here to do two weeks of physio and massage after our procedure. This area of Poland has a number of health spas and it is rather nice to go into town and see other chairs/scooter and canes. We had our procedure on July 4th night with Lynn. ...

Two of us are coming/going to Poland June 25th. We decided to stay for a couple of weeks after the procedure due to concerns about a long flight after the ballooning and also because of the blood thinners. I also know from other long air flights it takes me a while to catch up from the flight. Stayi...

Hik please add two more for June 25th. Diana and Sydney are arriving to get the procedure with Diana's sister. I'd love to get the list of tips, I've tried to follow and write down everything but I'm sure I missed some stuff. Sydney and I are going to stay for a couple of weeks after the procedure. ...

Hi, It is wild to find so many people from TIMS will be there during the same time. I am excited and nervous. What if they find nothing. What if nothing changes. What if things do change then revert back. What if everyone else is up dancing and I am sitting in my chair watching. What if what if.... ...

Having followed the TIMS posts for a while, I was emboldened to get on the list to get the CCSVI Procedure. I will be in Poland June 25th!!!! Thank you to everyone who has shared their experiences, tips, ups and downs. It made it much easier and I feel more realistic in what to expect with the proce...

Hi,, I just got confimred for Poland. Yeah!

I am curious to hear what kind of things people are doing after their liberation procedure to build on the changes from the procedure.

Please let me know if anyone found something particular tp be helpful.
Thanks.

In our MS support group the question came up about how much money would one need for the CCSVI procedure? I have waded through the 35 pages of the Bulgaria post till my eyes rolled back in on themselves, but could not find out an idea for an overall budget for one person and their caregiver. Is it p...

It's a tough call try to consider a drug therapy in connection with future fertility. Since Tysabri was fast tracked, and is so new, I think there just isn't a lot of informaiton. on areas like fertility. Don't know if it is at all useful, but my neurologist said I would need an 8 month wash out fro...

Re: Direct MS Statement. I think a really big player that is not mentioned in the charts are the drug companies. If you look at who has the most to lose if CCSVI takes forever it is the drug companies. Think about it. The MS society people can find work with one of the many other chronic illnesses. ...

Not everyone has experience with chat rooms and forums. It was a challenge for me to do my first post. That said, Anjel, a thick skin is a good thing when living with a chronic illness in a society that worships youth and perfect health. Don't give up, let's get back to CCSVI

Macleans Magazine is a central to right wing magazine. This article is brilliant= the first where I have seen the link to the role of the drug companies in the CCSVI debate. I love the growing momentum created by us living with the disease as opposed to those living off the disease.

Hi, I thought I'd share my Tysabri story. I tried Rebif for three years with relapses every 6 months. and deep depression. Thirty month on Mitozantrone (every three months) No relapses but bad side effects and I came near the limit of the total treatments since it remains in your system and can caus...

Thanks for the link Screamer. What shocks me is that in 9/9/09 the paper released described that higher levels of the JC virus in the blood and urine suggested a greater chance of it getting to the brain and causing PML. If this was known in Oct.2009 WHY has Biogen still not produced a test to ident...

I'm done. Even though they now talk about the rebound effect (never heard of it when I started) the risks outweigh my benefit. I hate that the new numbers of PML come from the business section not the medical section of the news. AND I don't think that Biogen will come out with any big test soon to ...