This Is MS Multiple Sclerosis Knowledge & Support Community

Hi shye I wonder if that's it. They did ask for $10,000 deposit. I haven't found anything on the web about medicare policy change. I was going to call Community Care and see if they could confirm - but then what do I do? You have a very good idea. I'm new to medicare so submitting the forms myself d...

Thanks for the reply's everyone! I probably should have mentioned that I was planning to switch to medicare to avoid the delays in my hmo pre-approval cycle. I'm about 7 hr away by car and was hoping to complete things in a week. I don't travel very well these days. I understood (from a person at Th...

Hi All: I just received word from The Vascular Group, PLLC in Albany NY that Medicare will not be covering any services related to ccsvi. I was told the initial cost of the office visit and ultrasound is $318.50 and they require a $10,000 deposit at the time of the venogram. Not sure what the full c...

Hi Montana: I was in a machine at Buffalo yesterday for about 2 hours. The tech said it was 1 of only 5 in the US. I think it was the 7 telsa (I asked but she didn't know). The wall / door way into the room looked like 2 in thick metal - yikes! Anyway, I didn't notice anything different during the M...

Hi Dragon - You were smart to have set this up early. I get the MRI's this week at Buffalo but I was too late into the study to get an MRV. They said they only did the MRV's for the first 200 to get some correlation to the Doppler (which I got two weeks ago). I think having the MRV images will be im...

Hi Hope: I don't know how it works in Canada but it sounds like your neuro is not a good "fit" for you. I've had to fire two neuros - One for outright incompetence, their not perfect. I finally landed at Jackobs - what a difference! I went in last week and enrolled in the study and got the...

Thanks for the reply's everyone. Cheer- thanks for the clarifications. Sounds like your very well informed! Kim - we should keep in touch. We'll probably be in the same boat. I've found posts about Dr. Patricia Coyle of Stony Brook University (long island NY). It looks like they may be planning to d...

Hi All: I just got into the Buffalo Study, Dr Weinstock Guttman is my neuro. I have already received the doppler test and I'm scheduled for the MRI Dec 5th. I just discovered that their not doing the MRV as part of the study anymore. They only planned to do an MRV on the first 250. So, I missed out....

Hi

I took one shot and got deathly ill, This wasn't like any flu that i've ever had. I never took a second. I was dxed wth ppms in 2000

Mick

Hi Sally: I was dx'd in 2001 (at age 49) with ppms. Looking back, my first symptoms were fatigue. I figured I was just getting old / stressful job / etc. Then I started to limp after walking fo awhile - then weakness in my left hand and arm. By the time I got an MRI the damage was well underway. You...

Hi GWA: I'm not sure how relevant this is but I've had ppms since 1999. I've lost count of how many mri's I've had. The ms has progressed significantly but my mri's have never changed - at all! I have one lesion at c1/c2. I just had one on a brand new machine with a very strong magnetic field , no c...

Hi Ian,

Thanks for the post - amazing stuff. My neuro has asked me to have a functional MRI. My normal MRI's never have changed since day 1 (6 years ago) but I have accumulated some significant functional deficits.

Maybe they'll give me a video I can post?

Mick

Hi Scooby: Is it just me or is this really scary? I'm scheduled to start fty720 soon. This is something to think about. I thought that tysabri just prevented t cells from getting into the csf. fty720 has the same effect (I think) it just traps activated t cells in the lymph nodes. thanks for the inf...

Hi Ian, Carole, and dignan: Thanks for the replys, I checked out the links digan supplied. It seems reasonable for me to try. I was also considering ldn but I'm not sure how I would handle pain. I currently take tramodul but I don't think it's advisable to take any form of narcotic while on ldn. I g...

Hi All: I've been asked to participate in a phase 3 trial for this drug (CFTY720). I said yes. Now I'm looking for potential side effects. My neuro said I will have to spend 24 hrs in the hospital after I take my first pill because it has been known to slow down your heart rate. Interestingly, this ...