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Experience Project.
I'm so glad that so many are doing well with this procedure. This is the third time that I gave an article to our neurologist at Allegheny General in PA. He knows Dr. Kerr (told us that last time). This time he said that he has had two patients who had this procedure and they both had their symptoms return after two years and that the procedure is very risky. He really isn't in favor of it.
So a 100% stop for two years vs the conventional 30%. Tough call.
Joined: Mar 22, 2007 Posts: 274 Location: Durango, Co
Posted: Sat Jul 19, 2008 9:30 am Post subject:
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
Joined: May 04, 2006 Posts: 3372 Location: Mid-Michigan
Posted: Sat Jul 19, 2008 9:47 am Post subject:
Lars wrote:
we have been discussing the ones taken for the Tovaxin trial which are not shared.
That may be what merlin is talking about.
Come to think of it, my wife's mri's are taken at a different facility. As in every other aspect, communication wasn't good between the trial staff and this other facility and now that I think about it, my wife could very easily request personal copies (of the mri facility staff), probably with success.
Bob _________________ Wife diagnosed with MS in Feb. 2006 and is a participant in the Tovaxin IIb clinical trial.
Joined: Mar 22, 2007 Posts: 274 Location: Durango, Co
Posted: Sat Jul 19, 2008 10:43 am Post subject:
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
Posted: Sat Jul 19, 2008 12:16 pm Post subject: Yeah okay.
Lars wrote:
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
Joined: May 24, 2007 Posts: 107 Location: Southwestern PA
Posted: Mon Jul 21, 2008 8:18 am Post subject:
"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.
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
My neuro is the same way. Will not discuss it at all. Just said they heard about and highly recommended against it, stated it was dangerous and pushed tysabri on me.
I told my neuro I sent my records in and now doesnt really treat me anymore. WHat I mean by that is, she pulled my steroids starting since I am looking into this treatment I wont be needing the steroids anymore.
I am still on my regualr DMD for now.
I am a little nervous because my appt date is for Jan 21st. Well we all know a lot can happen between now and Jan MS wise. heck I don't even know if i can do this treatment. I have high blood pressure, I am not sure if that will be an issue or not. I know a lot of people with Cancer and many do chemo. Not everyone had great blood pressure yet I am sure they still have the chemo. So I'll have to wait and see.
Joined: Sep 11, 2007 Posts: 667 Location: southern California
Posted: Mon Jul 21, 2008 1:23 pm Post subject:
Kyle wrote:
My neuro is the same way. Will not discuss it at all. Just said they heard about and highly recommended against it, stated it was dangerous and pushed tysabri on me.
I told my neuro I sent my records in and now doesnt really treat me anymore. WHat I mean by that is, she pulled my steroids starting since I am looking into this treatment I wont be needing the steroids anymore.
I am still on my regualr DMD for now.
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 diagnosed RRMS March 2007
pursuing endothelial healing
Copaxone, Swank, supplements, laughter
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.
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.
Joined: Apr 27, 2008 Posts: 81 Location: Los Angeles, CA
Posted: Mon Jul 21, 2008 8:40 pm Post subject:
Kyle - first, I met someone having HiCy who had high blood pressure so I don't think that would exclude you - though, if you are concerned about that, I would email Carrie and ask her.
Second - I agree - get a new neuro. First of all - it is really remiss of your neuro to treat you the way she is - you aren't definitively having this treatment and right now, it looks like you probably won't know until January! As you said, a lot can happen between now and January!
And as far as steroids go - I had just finished a course of steroids when I met with the docs at JH the first time...and I almost had a course shortly before I started treatment, though I opted not to.
I would definitely want to make sure that you are being treated fully by any neuro, regardless of what treatment you may choose to have down the line.
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