This Is MS Multiple Sclerosis Community: Knowledge & Support

So a 100% stop for two years vs the conventional 30%. Tough call.

Merlin 26,
That was a big time tease! Maybe you could IM me with all the dirty details. I think there may be some misunderstanding for some regarding the MRI's. I have CD's of my personal MRI's, we have been discussing the ones taken for the Tovaxin trial which are not shared.
Take Care,
Lars

..

Bob,
I can't imagine. The MRI site appointments are set up by the trial coordinator and according to my tech they follow the same binding rules as the site itself. I'm starting to feel guilty about continuing a Tovaxin thread here so I'll move on.
Lars

I sent you a pm explaining how to do it. Enjoy.

"So a 100% stop for two years vs the conventional 30%. Tough call."

Rainer,

My thought was that the two people our neurologist said he knew were probably not on this exact protocal. As I mentioned before I had given him articles three different times on this procedure. He never kept the first two articles and said he knew Dr. Kerr and would talk to him.

I think everyone is reading my post and assuming that I believe this procedure isn't effective because of what our neurologist said. That is not my feeling at all. One of the reasons I say this is because the first article I brought him on HyCy he said "I've used that drug before". Well, yes many doctors have used it for M.S., but not in the same way.

It's not like we sit there and have this great conversation about HyCy.

I love it; wouldn't it be great if you COULD have such a conversation with a doctor? Here we are making life changing decisions in a disease which has an unknown trigger and unknown cause, the standard treatments are marginally effective, and we have trouble even getting the docs to talk to us! God forbid you want something better.............

Man! It's so unfair. I hope your next conversation is more helpful!
Rant over; I feel better now
marie

Wow, Kyle. This sounds like it breaks the hippocratic oath on so many levels. Because you won't buy the prescriptions she recommends, she's punishing you by withholding steroids? Maybe the docs at Johns Hopkins can recommend another neuro in your area who will be more supportive?

best,
AC

_________________
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS

Wasn't criticizing you at all, your neurologist's casual dismissal of a treatment that is possibly far and away better then what he can offer you is where my sarcastic jab was intended.

ok so i have to choose in the VERY near future... aka like this week what kind of treatment will be best for me...

Kerr at JH diagnosed me today with early onset rrms I've had two T4 spinal cord lesions which have responded well to iv steroids...

I'm 29 and full of life! I'm blessed with the recovery that I have had and hope to stop this thing in its tracks.

HyCy while sounds scary is tempting. It would be great to think that I could suffer a little up front instead a lot over time. I have clean brain mris so far, but I also lost a grandmother to it so I know what it can do.

My choices are rebif avonex tysabri or hycy at hopkins. Anyone have input? I'm especially interested in those whov'e experienced hycy at hopkins with either positive or negative results.

thanks in advance for your input!

If you got the chance to end it now, do it now.

We were in a similar boat as you. My husband was diagnosed just over a year ago. He had a rough relapse, and he wanted to get it earlier rather than later. There's also good data to suggest that the earlier you do something like this, the better (no long term immunity memory perhaps). It was a rough 3 weeks, not gonna lie, as he got an infection, felt pretty sick, etc., but is very happy to have done it. He had no further progression and has now just finished getting stents at stanford for occluded jugulars. I lost a grandmother to MS and have certainly seen what it can do, so perhaps I am biased, but the earlier the better.