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A board to discuss Revimmune as a potential therapy for multiple sclerosis

Postby Lyon » Sat Feb 16, 2008 9:52 am

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Last edited by Lyon on Tue Nov 29, 2011 7:18 pm, edited 2 times in total.
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Postby chrishasms » Sat Feb 16, 2008 2:03 pm

Amen Lew
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Postby chrishasms » Mon Feb 18, 2008 5:06 pm

All tests done, sitting here waiting on MD to let me know if I can go sooner.

Lost my right hand more today....damn lol

Ti iiiii iiiiiiiiiiiiiiiime is on my side...yes it is!
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Postby chrishasms » Mon Feb 18, 2008 5:25 pm

I do not believe in fairy tales. I do not believe in these thing happening to me. In fact if it wasn't for a guy named Joel I would think really screwy but that neither here nor there lol.

I wouldn't have any more hope for this except....

More than one Doctor is reporting the results, and I was told by the doctors at John Hopkins it's OK to have some hope. If JH says it's ok not to expect to run again, but it's ok to expect something good, I'm going to.

Tim is the poster child for Tovaxin as Revimmune may be Brett, me etc... but where are the other folk with improvements?

Is Tim the only one on Tovaxin who got better and if so why? Why is it the folks on Revimmune seem to stop and get a little something back? Why is that more news worthy

It of course all depends on permanent damage I'm sure.

I have not had one doctor tell me too expect one thing out of this disease but what I've gotten. No neuro lied to me. I wasn't given tons of info at first but never was I lied to.

The people at JH told me, "We don't know how much you'll be getting back but based on what we are seeing in others you can expect good things."

Poll: Did your neuro ever tell you - You may get something back?

Thought so lol







JH told me to open my big mouth. I'm doing that.
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Postby chrishasms » Tue Feb 19, 2008 5:02 pm

I had a phone conversation with Dr. Hammond today. I got teary eyed and stupid lol. It's happening. They are getting faxes of completed tests as we speak.

They are going to try to get me in there ASAP, we are just waiting. We do know that the 3/11 is for sure.

When I heard him...well I don't get it really. I didn't get teary at my wedding.

For the first time in 2 years, I am starving! lol
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Postby HiCy » Tue Feb 19, 2008 7:05 pm

Chris,

You need to hang tight. We have all gone through some very tough times. Based on all your recent activity I am guessing that you will do very well after the revimmune treatment. Just keep looking up and realize that things will get better. You are in good hands with Dr. Hammond and company and they will be doing what ever it takes to improve your condition. I don't think there is anything wrong with hoping when it comes to this treatment. If you can get the disease under control who knows what your body can do. I am guessing that you are suffering from a lot of inflamation due to the current activity. This is the perfect condition for this treatment.

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Postby rainer » Tue Feb 19, 2008 7:58 pm

Good luck, man. From what I have read about this process it is very involved. My only advice is to question any procedure or doctor/nurse you aren't sure of. And raise hell if something doesn't seem right.

p.s. did you know 311 is police code for indecent exposure? :)
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Postby Nya » Tue Feb 19, 2008 8:23 pm

Our appointment is fast approaching. So excited and nervous. Chris, in another thread you posted the requirements. Kinda made my head spin. Did you need to bring all those results to your assessment or were they ordered after? I also got confused while reading other threads. What is your EDSS? I think I understood that it's 4 and that you were conserned it might be to low for revimmune- is that right? I worry that my husband's (7/7.5) might be to high. What do you know about the EDSS window?
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Postby HiCy » Tue Feb 19, 2008 8:32 pm

Nya,

Don't worry about the tests. If you are accepted into the treatment they will have you get the tests lined up with your neuro or primary at home before you start. They are quite simple and set up a baseline in regards to the MS as well as the effects of the cytoxan. I wouldn't worry about the EDSS either. They will look at your husbands history and that will be the main factor. Has he had MS for a long time? Is the disability recent? I am sure these are some of the questions they will ask themselves. Remember one of their greatest success stories is in regards to one individual that went from a wheel chair to running 2 1/2 miles per day. The one thing that you are trying to do over all else in this treatment is stop the disease. As far as I can tell this treatment is doing it better than most of the others.

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Postby chrishasms » Wed Feb 20, 2008 6:16 am

Well this is doing better than other treatments just because an endpoint is to restore some function. Um ya I'll take one, even 2 lol.

My EDSS is a 6, and in the last month and my balance issues it may be worse. I was diag'd June of 2004 but have MS-ey weird stuff since 98 ish and maybe even before.

They took like 9 vials of blood from me. I've had an Echo and EKG. They did a Cat scan on belt line to forehead, and a chest Xray I've also had full lung function tests. The heart and lung stuff I was excited to do, because I have a genetic history with those and having a baseline when I am 32 is great I think.

They were all incredibly easy. I believe the protocol says it needs to be done x amount of time before the treatment. I wouldn't put the cart before the horse just yet.

All I can say is pray your MRI has white spots.

Much luck to you!
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Postby chrishasms » Thu Feb 21, 2008 4:45 pm

OK it's official..

I'm gone the 10th of March until it's done.
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Postby guitarguy » Thu Feb 21, 2008 6:49 pm

chrishasms wrote:OK it's official..

I'm gone the 10th of March until it's done.


Chris congrats and thank you for posting this information. I found this thread while doing some research today and left a message at JHI for my wife. I think this is exactly what we have been looking for. I will be eagerly awaiting your results and wish you a speedy recovery.

guitarguy ;)
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Postby chrishasms » Thu Feb 21, 2008 9:06 pm

I miss playing guitar lol Hope this gets me that back. It's only a year or so gone. The drums may be too long but guitar maybe I can do again.

I just received a investors book from Acentia and they are really gung ho about this and numerous other treatments they are developing.
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Postby sh8un » Thu Feb 21, 2008 9:17 pm

congrats...I wish you all the luck in the world.
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