re: article High Time for HiCy?

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

Postby Lyon » Fri Aug 29, 2008 12:35 pm

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Postby Loobie » Fri Aug 29, 2008 1:38 pm

I've got one question: what the heck is the 10 for on the EDSS? It reads verbatim "Death due to MS". I'm getting my MRI's soon for application to JH. HiCy could have a 20% mortality rate and I'd still want to do it if I qualify. Once you start experiencing MS 'in all it's glory' you can see in the future what MIGHT be in store for you. Living like that is not an option I want to consider IF I can avoid it. Life is not black and white as in 'dead or alive'. Life is supposed to be lived, not watched. I would have thought the same way as Kyle while I was still running but having bouts of ON and mild bladder issues. Now that I can only walk about 500 fet before I need my cane and have had episodes where I literally needed to just sit down or I was going to fall, it's alot more appealling. I know it may not work, and I have fully accepted the fact that I indeed have MS and may become disabled. I just feel the need to do everything that I can to stay on my feet. I've accomplished a lot in my life, but I was just hitting my stride.

I have a good friend whose brother went from 0 to 10 in seven years. It ate him alive. He was almost progressing before our eyes. He came to one racquetball tournament (he was a player as is his brother) and he had a cane. It seemed like the very next one he was in a wheelchair. In just one year after he was in his chair he could barely communicate. He couldn't look at you straight and had a major league bad case of it. Some of you have probably heard of Dr. Ian Duncan up in Wisconsin. He told my friend that his brother had the most aggressive case he'd ever seen. Now that is obviously not going to happen to most of us, but I will never, ever buy into the fact that MS can't be fatal. I've seen it. Even if he did die from some secondary thing like pneumonia, he wouldn't have gotten where he was were it not for the MS. If you've experienced some 'real MS' and someone puts up a potential opportunity for a better than average chance at recovery, it really doesn't matter what the stats are. To me anyway.
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Postby gwa » Fri Aug 29, 2008 2:17 pm

Loobie wrote: I just feel the need to do everything that I can to stay on my feet.

If you've experienced some 'real MS' and someone puts up a potential opportunity for a better than average chance at recovery, it really doesn't matter what the stats are. To me anyway.


I would do the exact same thing as your are doing if I could turn back the clock at least 30 years. One thing going for JH is that they have some of the best doctors in the world and I would trust them with my life.

Good luck to you and I hope you get your chance at JH.

I am assuming that chrishasms did not croak and is just staying away from here. Otherwise, I might change my mind about going to JH.

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Postby cheerleader » Fri Aug 29, 2008 2:40 pm

gwa wrote:I am assuming that chrishasms did not croak and is just staying away from here. Otherwise, I might change my mind about going to JH.

gwa


Ha! You're right, Chris is alive and well, gwa...he's just staying away from MS boards. Lots of us tried to encourage him to stick around here, but he felt he did his part. You can read his updates on chrishasms.com He's seen alot of improvement and is doing PT.

Lew- I'm really thinking of you, buddy. It's been so hard to read about your progression. We all hope for stability, but you are doing the right thing. I'm praying JH takes you, if it's meant to be. Please keep us posted on the process. JH is an amazing place, and from everything I've read, you will be in good hands. Also glad to read your Mom is there.
Bob- I've been looking out for Revimmune in the west. No news from out here...yet.
AC
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby Lyon » Fri Aug 29, 2008 6:44 pm

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Postby Loobie » Sat Aug 30, 2008 4:37 am

I did mention ThisIsMS when I was talking to Carrie Trekker's assistant Dana. She was like "OK!", so they are familiar with our site. I AM still staying in the IIb while I get it all ready. I have my records but need an MRI of cervical and thoracic spine and also of head. But there are some different contrast agents from just GAD that are needed so I've got the bat signal out for that to find someone who is in network in UHC. I'm kind of scared because I'll have to take so much time off of work. Since I work in the automotive industry, now is not a good time to be doing anything but shining. However, weighed against my MS, I could really give a damn since if the progression keeps up, I won't be doing what I'm doing professionally much longer anyway. I wanted to wait until my wife was done with her RN. She has only fall quarter left, and I'm afraid the timing is just going to be a little off. Oh well, I have to do this no matter what the cost in the short term, but I had been trying to 'gut it out' for three more months, but I'm not now. I'm going for it. I just hope I get accepted.

You are all right about Chris. He's staying away and just posting on his site. He seems to be improving, but time will tell. I know that Mel (Jamie's wife) has really responded to all of this. I commend her for her courage and love the fact that she feels 'back to normal'. I would be content to just be able to walk around the block again. I don't think any 5K's are in my future no matter what I do, but to be able to stay on my feet is something I really want. What's going to happen is going to happen, but I just have to try. It makes you sterile, but I've already been to the vet :D
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Postby Lyon » Sat Aug 30, 2008 8:21 am

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Postby Lars » Sat Aug 30, 2008 11:22 am

Two people have died in my local (and small) group in the past two months. Both had progressed to a fully dysfunctional place. Cause of death in both cases was noted as "complications due to MS." No-one dies from MS, but many do from the above mentioned COD. I am totally with Lew on this one, try anything, do anything, but never sit around doing nothing until you become one of the "complications due to MS" statistics.
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Postby gwa » Sat Aug 30, 2008 2:20 pm

Another thing to remember is that a person needs to try anything that works while still in the RRMS stage. Once you progress to SPMS (without relapses), there is nothing for you to take and your future is a steady downhill course.

If RI was offered in a Caribbean clinic by an unknown doctor, I would run in the opposite direction fast. That is not the case with JH and it would be worth the money and risk to me, especially since no one has died from the procedure and most have gotten a lot better.

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Postby Lyon » Sat Aug 30, 2008 9:01 pm

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Postby ZO_Krille » Sat Aug 30, 2008 9:55 pm

here here........ first lets stop the progression and then can wait for nerve repair research to catch up. Its also been shown that some nerve repair has be accomplished in some patients on their own.

First step is stop the progression regardless of type MS... RI can do this for all MS. My hope is that once RI phase 3 trial is complete they will say its ok for PPMS and SPMS.

Now the $64,000 question...... how long will it take for phase three trial to complete?

Tired of being left out in the cold becouse a "type" of MS that i've been tagged with when all MS is MS really.

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Postby Lyon » Sat Aug 30, 2008 10:05 pm

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Postby RedPenguins » Sat Aug 30, 2008 11:26 pm

Loobie (Lew?) -

Good luck with getting the testing done - and I hope you can get in to JH and get the relief you are looking for.

Yes, Bob, HiCy can cause sterility - either short term or permanent. This was my biggest concern when I chose to undergo HiCy. I'm only 32 and want children. However, as it was pointed out to me by my loved ones - I would never opt to have children with as sick as I was - and with the future looking so bleak for me....and thus, risking it was my only shot to have children in the future. I'm almost 2 months out from the treatment. Doc wants me to wait for 3 months before stopping birth control pills - to continue to protect my eggs, as he said. Sigh. So, one more month - and then I stop and see if my cycle returns.

I will say - it was one of only a few times when I wished to be a guy - I could've just frozen some sperm! Not so easy for a woman to freeze her eggs (and then to have a viable live birth from frozen eggs).

I hope that they find HiCy can help all types of MS. In the mean time - I wish for all of you to continue the good fight!!

~Keri

ps/You guys are dead-on with one thing for sure - the people at JH ARE the BEST of THE BEST. No doubt about it. (When I was a teenager, I went around the country with my mother - who was fighting cancer - and she was treated by many doctors and hospitals - including at The National Cancer Institute....but I'm telling ya - no one holds a candle to the people at Hopkins! Hmmm....maybe I will have to name my first child Hopkins? tee hee)
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Postby Loobie » Sun Aug 31, 2008 4:38 am

Bob,

I have really kept up with what people are saying about Campath and have followed Robin's course. However, I can't figure out a way to get my hands on the real stuff. My site is doing a trial that is controlled against Rebif. I just can't take another year long (or longer) chance that I'm not getting it. Interferons and me are a no-no on two fronts, so I can't take Rebif. Avonex did enough of a number on me. If you know of a way I can get real Campath, let me know and I'll look into it. That drug there really looks intriguing. I got a message yesterday when I was out about an appt. at the MRI place, so I hope to schedule my appt. next week. I can't wait to get the ball rolling, but I'm of course apprehensive in case I hear "you don't have enough enhancing lesions". That would suck, but I had seven big and bright ones when I got into the tovaxin trial where I had an "unremarkable" MRI before that. Does anyone know how to get a tag put in your brain that looks like an enhancing lesion? :D

I saw my wife's aunt who has had MS for a very long time yesterday. For probably the last 15 years she has seemed exactly the same. She uses a walker, but has always gotten around with it fairly well all things considered. You can tell she absolutely needs it, but she could always do a whole lot more than people ever thought she could. I haven't seen her since X-mas and it looks like she is going to a chair full time soon. She was barely getting around with that walker. Granted she is 66 now, but her slip is definitely her MS. Her legs look so stiff now that I was really taken aback watching her try to get around the lodge where we were having the family reunion. We talked at length (she is in the MBP trial and doesn't feel a thing) and she is like "you go for that no matter what it takes, I sure would have like that opportunity". Since I think the gov't is full of doody about 99% of the time anyway, why should I give a crap about whether or not it's FDA approved? I guess I just answered myself on that one.
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Postby Lyon » Sun Aug 31, 2008 5:51 am

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