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

Postby chrishasms » Wed Feb 13, 2008 7:42 pm

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Postby HiCy » Wed Feb 13, 2008 8:05 pm

Chris,

You have to go back every three months for the first year and then I think twice in year two and then probably every year after that or maybe twice a year. I have not gotten to that point so I have not asked. I just know it is every three months for year one. Some people say the Nupogen makes their bones ache. I did not have any side effects from the shots.

If you are talking about the MS being over well we are all certainly hoping that is the case. If it is over then what you are about to go through will be a very small price to pay. It is certainly one that I would go through again if the MS came back. We are all crossing fingers that it is gone forever. I have a feeling that if the initial results can be expanded to a larger group of patient the demand for this protocol will be enormous. This I feel is evident just from the response we have received through this forum.

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Postby Nya » Wed Feb 13, 2008 8:47 pm

Thank you HiCy and Chris. How long was it between your initial assessment and the official go-ahead? I have my fingers and toes and eyes crossed for Geoff (my husband) and you and everyone affected by this f'd up disease.
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Postby chrishasms » Thu Feb 14, 2008 6:37 am

I had my assessment on Jan 9th, and 5 weeks later to the day I got the word I had an appointment to get poisoned.

My wife and family knows this and I'm now going to share it with you all...

I have moments of Deja Vu, just more intense kinda. No I'm not weird lol...

I've dreamed about the future my whole life. I remember these dreams I have, but usually the ones that really stick out in my head are going to happen. I'm not saying I can predict 911 or anything, but last summer before we went on our fishing trip I knew we would limit out. When it happened, the scene of the guide taking pics of my wife and I with fish, well I had been there and I was like, "Oh OK, I dreamed this."

I have had a dream, a recurring dream, of me walking unassisted through my front lawn, out onto my driveway. When I get to the driveway I jog all of 10 feet, and I'm chasing something. I can't make out if it's my dog, or if maybe I have a lil one. My neighbor is outside in her front yard too. It's a sunny day.

When the Tovaxin trial fell through for me, I had this dream more. I couldn't figure it out. I was like, "Great this crap is taking my body and mind." I really figure I was just torturing myself.

So the I meet this guy named Brett on the internet, and the dreams normalize. The dream only happens so often. So I decided to try and get into the study.

Last night in my dream I walked out my front steps, smelled my roses, walked over to the tree in the front yard and snapped a dead stick off, I saw the dog run towards the neighbor lady, I walked across the lawn, jogged across the driveway to her yard, grabbed the dog, and walked back.

The dream is clearer.



I can't wait. I just simply can't wait.
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Postby Jamie » Thu Feb 14, 2008 4:54 pm

Chris,

I don't think you're weird.

I too have extreme deja vu. It's an oddly powerful feeling, like vertigo. It tends to come at moments of extreme stress for me.

I can't really explain it to people but I am WITHIN the deja vu moment and silently I predict what will happen next, and I'm usually right word for word.

Most odd.

Cheers,

Jamie.
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Postby Lyon » Thu Feb 14, 2008 5:32 pm

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Postby cheerleader » Thu Feb 14, 2008 7:37 pm

Hey Chris-
I've been following your journey with great interest. Thanks for sharing that beautiful dream. The fact that it is recurrent and so vivid means something. It's very personal and will all make sense someday. Hold on to it when/if things get tough.

My Mom has vivid, real dreams that manifest in the future. She drowned at the age of 12, had a near death experience (complete with the light tunnel, life review, a welcome by her grandmother and quick return to her body when she was resuscitated.) She came back a "little different." I never doubt her words of wisdom. Her dreams sustain me.

keep us posted!
AC
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby Nya » Fri Feb 15, 2008 8:14 am

I firmly believe in the power of dreams. My dream is walking on the beach with my husband.
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Postby chrishasms » Fri Feb 15, 2008 3:12 pm

I just finished all my lab work but the lung tests and the Echo test. These are going to be done on Monday.

She will have all but a few of the test results on Mon, all of them they said should be by the end of the week.

So lets hope JH can move it a bit quicker. Then again, I don't think they were expecting me to get it all done in one day :P

I don't know if I'm proactive or more of a suppository towards some people. I just want this done! :P
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Lab results

Postby lyndacarol » Fri Feb 15, 2008 4:57 pm

Chris, do you get a copy of all those lab test results? I would be interested in what they find in the sinuses. So many with MS seem to have a problem there.
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Postby Lyon » Fri Feb 15, 2008 5:25 pm

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Postby chrishasms » Fri Feb 15, 2008 5:41 pm

I am, but now I'm just going by what I have been told I can expect.

Generally speaking Bob, there is around a 8-10 year rage it seems where forms of MS like mine, the lady in rebooting times, the lady in the video, do very, very well. The permanent damage in these MRI active forms seems to be limited. Brett is right on the outside of the bubble, and I think he will tell you he has had it too long to expect total recovery. He is thirteen years out, I am 4.

I will be blunt. If this doesn't work so what? I wouldn't trade the little bit of hope and happiness I feel right now for the world. Everyone involved is expecting more than I am. I refuse to get tooo excited but damn it why not? What do I have to look forward to besides this? Oh ya, more disability!! LOL

Maybe I'm just finally feeling hope. Like I said, even if it all crashes down, I got this right now!
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Postby Lyon » Fri Feb 15, 2008 6:12 pm

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Postby chrishasms » Fri Feb 15, 2008 6:22 pm

I was and still am. Until someone on a JH team tells me to stop being optimistic. He did say based on other folks he can't say I will run again, but he did say I should expect good things. Just the end of the inflammation we know will give me something back.

This is the first time I have ever had anyone tell me to expect good things and not disability.

I'm in the middle of an exasperation so the fact it will be done soon...whoo hoo!
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Postby Loobie » Sat Feb 16, 2008 6:38 am

Chris,

I know how you feel. It's like on those days where your MS is really quiet. You know in your heart that tomorrow will probably suck again, but you thank God for just having a day where you can unbridledly (is that a word) be who you know you are and laugh heartily and just fucking feel good! I live for those days. Bob, I suppose it is hard to relate to it on that level. I wouldn't have understood what he is really talking about before MS, but I do now. When I think about Tovaxin. In my mind I don't imagine it being as permanent as the Revimmune, but I look forward to even a small time where I am not dizzy and can "clearly" enjoy a sunny day, or even a meal I don't have to shovel in because I'm nauseous.

To sum it up for me I'd have to say that after facing down the probability that you may never feel good again IN YOUR LIFE, even a small reprive is absolutely priceless. I just want to be out of the GD fog for a bit.
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