no matter what

robbie · Posted: Fri Jul 11, 2008 7:36 am Post subject: no matter what

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.
_________________
~i guess i know i just hate how it sounds~
I see seven towers
But I only see one way out

gwa · Family Elder Joined: Dec 02, 2005 Posts: 847

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.

gwa

robbie · Posted: Fri Jul 11, 2008 9:07 am Post subject:

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.
_________________
~i guess i know i just hate how it sounds~
I see seven towers
But I only see one way out

syckbastid · Family Member Joined: Jan 04, 2007 Posts: 46

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.

danny · Posted: Fri Jul 11, 2008 9:30 am Post subject: Reaching the edge

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.

Danny

gwa · Family Elder Joined: Dec 02, 2005 Posts: 847

cheerleader · Posted: Fri Jul 11, 2008 10:58 am Post subject:

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/NCT00296205?term=multiple+sclerosis&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 diagnosed RRMS March 2007
pursuing endothelial healing
Copaxone, Swank, supplements, laughter

robbie · Posted: Fri Jul 11, 2008 11:08 am Post subject:

tmcdaniel · Newbie Joined: Dec 27, 2006 Posts: 6

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

gwa · Family Elder Joined: Dec 02, 2005 Posts: 847

[quote="robbie"]

gwa · Family Elder Joined: Dec 02, 2005 Posts: 847

robbie · Posted: Fri Jul 11, 2008 4:09 pm Post subject:

is that what i need gwa a miracle
_________________
~i guess i know i just hate how it sounds~
I see seven towers
But I only see one way out

Terry · Family Elder Joined: Oct 27, 2007 Posts: 272

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".

Terry · Family Elder Joined: Oct 27, 2007 Posts: 272

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

http://www.clinicaltrials.gov/ct2/show/NCT00468611?term=spms&rank=2

CureOrBust · Posted: Fri Jul 11, 2008 9:19 pm Post subject: