no matter what

If it's on your mind and it has to do with multiple sclerosis in any way, post it here.

no matter what

Postby robbie » Fri Jul 11, 2008 6:36 am

is there anyone out there that has a certain point of disability that will put them over the edge or is that not the BRAVE thing to do, i know that i will not live the rest of my life like this, it's to much for my wife and i.reading how most are doing so good with their drug of choice is not helping me any so thanks for this site and good luck.
Had ms for over 19 years now.
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Postby gwa » Fri Jul 11, 2008 6:57 am

robbie,

You could check into trials in Canada for stem cell transplant and see if you could get into a trial. On the drug pipeline forum stem cell transplantation is listed as being in the last phase of testing for progressive MS, so it is worth a shot for you.

Wait at least a year to pull the plug because there does seem to be a few meds in the pipeline that may help you.

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Postby robbie » Fri Jul 11, 2008 8:07 am

i tried a few years back to get to the stem cell trial in Ottawa but took my neuros advice and didn't do it.
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Postby syckbastid » Fri Jul 11, 2008 8:25 am

I told my wife if I end up in a chair, I'm wheeling myself off a cliff. She told me she'd rather have me so fucked up that I could only communicate by blinking in code than not have me at all. Would you say your wife feels the same? Suicide can always wait.
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Reaching the edge

Postby danny » Fri Jul 11, 2008 8:30 am

Robbie, Every numbness,or blindspot, or band that wraps my arms, or word that I can't find, or need for a diaper, or realization that am not smart any more drives me to the edge! Look at how many people read all these forums and how few comment; we are not all doing well! Many of us are just reaching the corners and going over the edge to crawl to another way of coping. Reading the discussions helps like you wrote...bravery comes in many forms. Having MS makes a person brave.

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Postby gwa » Fri Jul 11, 2008 8:40 am

robbie wrote:i tried a few years back to get to the stem cell trial in Ottawa but took my neuros advice and didn't do it.


Things have come a long way in stem cell research in the past few years. As far as I know, no one has died recently from the procedure. :D

Maybe you should try again to get into a trial. There has been some good news recently about adult stem cell transplants and it looks like the researchers are beginning to understand how to do it correctly now.

There was an article today on medicalnewstoday that described how researchers have cured mice (90%) from muscular dystrophy using stem cells. I don't think MS treatments are far behind.

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Postby cheerleader » Fri Jul 11, 2008 9:58 am

Hey Rob....
That stem cell trial in Canada didn't really have terrific results-
"Autologous Haematopoietic Stem Cell Transplantation Fails to Stop Demyelination and Neurodegeneration in Multiple Sclerosis"
http://www.medscape.com/viewarticle/557690

Gwa's right, they've come a long way since that trial, and docs understand the process even better today. So don't beat yourself up on that one. I'll see if I can find any new trials.

The only thing that "seems" to be working right now is the hicy.
Here's the Stony Brook info....they actually want progressive folks.

http://clinicaltrials.gov/ct2/show/NCT0 ... s&rank=136

Please, at least call them and find out if they'll take a brave Canadian with no money.

I'd never ask Jeff to stick around longer than he wanted to...speaking as the observer, the wife. Only he knows how much he can take. You know I appreciate your honesty, and so do all the silent thousands that come here for answers. And there are alot of us routing for you.
AC
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby robbie » Fri Jul 11, 2008 10:08 am

I'd never ask Jeff to stick around longer than he wanted to...speaking as the observer, the wife. Only he knows how much he can take. You know I appreciate your honesty, and so do all the silent thousands that come here for answers. And there are alot of us routing for you.
AC

thanks cheer jeffs a lucky man, karen feels the same as you so i guess that makes me lucky too.
i am not brave at all i'm scared of what the near future is going to bring. so maybe stoney brook will take a chicken shit canadian with no money.
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You Say What?

Postby tmcdaniel » Fri Jul 11, 2008 1:10 pm

YOU SAY…. GOD SAYS… VERSE
"It's Impossible" All things are possible Luke 18:27
"I'm too tired" I will give you rest Matt 11:28-30
"Nobody really loves me" I love you John 3:16
"I can't go on" My grace is sufficient II Corin 12:9
"I can't figure things out" I will direct your steps Prov 3:5-6
"I can't do it" You can do all things Phill 4:13
"I'm not able" I am able II Corin 9:8
"It's not worth it" It will be worth it Rom 8:28
"I can't forgive myself" I forgive you I John 1:9
"I can't manage" I will supply all your needs Phill 4:19
"I'm afraid" I have not given you a spirit of fear
"I'm not smart enough" I will give you wisdom I Corin 1:30
"I feel all alone" I will never leave you nor forsake you Heb 13:5
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Postby gwa » Fri Jul 11, 2008 2:14 pm

robbie wrote:
i am not brave at all i'm scared of what the near future is going to bring. so maybe stoney brook will take a chicken shit canadian with no money.


Miracles do happen.

gwa :)
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Postby gwa » Fri Jul 11, 2008 2:20 pm

cheerleader wrote:Hey Rob....
That stem cell trial in Canada didn't really have terrific results-
"Autologous Haematopoietic Stem Cell Transplantation Fails to Stop Demyelination and Neurodegeneration in Multiple Sclerosis"
http://www.medscape.com/viewarticle/557690

Gwa's right, they've come a long way since that trial, and docs understand the process even better today. So don't beat yourself up on that one. I'll see if I can find any new trials.

The only thing that "seems" to be working right now is the hicy.
Here's the Stony Brook info....they actually want progressive folks.

http://clinicaltrials.gov/ct2/show/NCT0 ... s&rank=136

Please, at least call them and find out if they'll take a brave Canadian with no money.



That link is for a trial that should have ended 2 years go. Did you mean to post about a more recent trial that is recruiting?


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Postby robbie » Fri Jul 11, 2008 3:09 pm

is that what i need gwa a miracle
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Postby Terry » Fri Jul 11, 2008 6:07 pm

Robbie, This is from May 2008. It is a trial in Canada for the Maestro drug. Maybe there is still room in this one? They were looking for SPMS'ers.

http://www.saintlukeshealthsystem.org/slhs/System/Newsroom/Archive/SLBSI_trial.pdf

It is one injection of peptides each 6 months. "17 amino acid peptides identical to the natural sequence" is what I wrote in my notes at a seminar. Also my notes say "no side effects".
Last edited by Terry on Fri Jul 11, 2008 7:43 pm, edited 1 time in total.
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Postby Terry » Fri Jul 11, 2008 6:28 pm

Robbie, they are still recruiting. The info is here.

http://www.clinicaltrials.gov/ct2/show/NCT00468611?term=spms&rank=2
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Postby CureOrBust » Fri Jul 11, 2008 8:19 pm

robbie wrote:... but took my neuros advice and didn't do it.
was his advice based on the fact he thought it might be your end? Thats what you started the thread on wasn't it.

My position on the original topic, is that just before I seriously consider that, I would risk/blow everything on trying anything :twisted:. Even Lyons' pig worms! 8O and I'm talking walking (or crawling) barefoot in pig... :cry:
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