MBP8298 Dirutide
 

On this med Half way thru a two year study.I will write more if people are interested.Jim

Sure, Jim...Welcome and please tell us more about your Med. Are you on the real thing? Is it helping you?

:hug:

Welcome. We're all hungry for knowledge so we'd love to hear your experiences.

yes please! tell us more.

Good for you :D and yes, please keep us informed;)
Linda

Please update us on your clinical trial details. Also, Welcome to the forum! :)

MBP8298 Dirucotide
 

Hope I spelled it right this time.I will be posting my experience with the drug study.As soon as I can write it.Not too sure about how this works.Dont want to write a long letter and have it lost!Jim

Jim,

What many of us do is type out a long reply on a Notepad or Word processor document. Then just copy and paste. That way you have it saved.

You might have to hit the enter key 2x to leave spaces between paragraphs. The spacs don't always copy correct. But it sure is better than having one go *poof*.

Another hint...if it's really long, split it up into a few posts. It makes it easy for people to read.

If you need any help, let me know. Welcome. :hug:

MBP8298 Dirucotide
 

I sure could use some help,don't want to mess up.If i write a long letter on my drug and I lose it argh.:mad:I just joined and I don't want to mess up.Now I'm in a four year study of this drug.But I'm sure that I received the placebo.At the end of the two years I started the real drug.That was in Feb of this year.I lost a lot in two years which has left me with a very black depression.Lost, my health,happiness and hope.Till I read the post today on this site,it can work.It has been only a month.Plus the two and a half years before Feb.They still haven't told me if I was on placebo or not.So this has been the worst two years of my life.I can't put into words how hard this has been.Trusting a Dr that I have seen since 1984 choose to gamble my health away.I would not do this to any one.Many times I said how does this help anyone losing my ability to walk.Stress makes MS worse and I've had more than enough.I dont want to give anyone false hope but this is what has happened to me.Should I tell my story or just if this drug helps?Thanks For listening Jim

Hey Jim, just join in with us. We will support you, no matter what your drug of choice. Keep us up to date since you are getting the real thing now. We are all in the same boat....waiting, hoping and living.:hug:

we all have different drugs of choice, and some chose no drugs at all. We are always happy to hear others stories.

If you are afraid of losing it, type it out on your word processor program, then copy it, and paste it to your response here. Ta da! no muss no fuss.

looking forward to hearing from you.

MBP8298 Dirucotide
 

Thanks to all
I'm so glad I found a place that I can talk about the study.I am going to write and let you know if this drug works or not.I been in the study since Oct 2006 my first infusion was Feb 2007.I walked to those appts with a hiking stick.Then another infusion Aug 2007 still hopeful started having more problems.I thought ok its only been 2 infusions maybe it works slowly.Ok Feb 2008 another infusion really having problems balance,legs are weaker feels like they weigh 300lbs each.I start to fall anywhere anytime.Time for a walker thinking this drug isn't working or I'm getting a placebo.Depression is now really overwelming.All the needles,Ivs tests MRIs for what.By June 2008 needed help getting to the appt then a wheelchair to get to all these tests.Aug 2008 another infusion.Nothing again just black depression and one leg that I couldn't lift.Oct 2008 Begged them to find out if I could get meds sooner No.The study does not allow that.I was crushed my next infusion Feb 2009 was the real drug and I begged.By Nov 2008 my pain went out of control.My leg felt like someone was stabbing it to the bone then setting it on fire.I have neuropathic pain but this was new.Gave up three more meds to take.Okay just make it till Feb 28,2008 what else just stop asking for help early.Three days before the infusion I had what I thought was a stroke.I couldn't talk and when I tried I sounded like a robot with words mixed up or backwards.I have little memory of this.I repeated myself for 6hrs.Went to my appt on Fri and after a eeg,ct scan and ultrasound the Neuroligist says its Transient Global Amneisia.So they gave the infusion MBP8298 not one day sooner to help me.I have never cried in front of the people I trusted with my health now I can't stop.Hope that this drug works because it cost me and many other people everything.Anyone out there with the same story Please write me.Thank you for reading.Jim

MBP8298 Dirucotide
 

Spelling error Dirucotide
And I'm halfway thru a four year study sorry meds alter my personallity as well as good looks!:winky:

Wow Jim, sounds like you,ve been hrough the mill..:( I will pray that the real stuff works for you!!

Please keep us up to date and thank you for being a lab rat for us..:hug:

In the meantime come into the Stumble Inn and join us for some silly banter, to keep our minds off of our troubles.:D

Hugs and prayers for you! Please keep us updated on how you are doing.

Jim, I noticed you're from Napanee. Small world, I grew up (14 years) in Belleville, Ontario :)

I moved out east in 1996, but my parents still live in Belleville.

Thanks
 

Hey Thanks 4 reading and your comments.Will write to keep you up to date on this. Your Canary Jim

Welcome. Keep us posted when you can.
The stumble inn is a great place for a laugh.
Jump in, chat, get it all off your chest, moan and whine to your heart's content.
It's great here!!:wink:

Hi Jim and Welcome to NT!! I'm so sorry you've been having so many difficulties lately. This disease sure takes it's toll on us whether or not we're involved in a clinical trial. Hope your experiences get better soon!! If you're up to it, please keep us posted and jump right in any other time.

Hugs.......:)

Mbp8298
 

I will update everyone on this study as my next infussion is in august.They said that I am now receiving the meds for sure.Hmm I may or may not been on it.Now Im walking very little the pain has increased along my sadness.I guess Im doing a good thing,just doesnt feel that way.....:(

Awww,sorry, Jim. I hope your August infusion proves to be the magic bullet and things improve for you.

Thanks for checking in..:hug::hug:

Thank you for sharing, I will be keeping a close eye on your experience and this site.

Best of luck!!

Thank you jim
 

Jim, thank you so much for being part of the Double-Blinded Clinical trial for MBP8298. We all appreciate your time, effort, and willingness to participate when you didn't know which drug you were on.

Well at last you will receive the real drug. We truly hope it does wonders for you. You waited and under went all the protocol, so now it is your time to let the drug work for you, I pray it does.:) Please keep us informed, okay?
Thank you Jim :)

Hi
 

Hey everbody they recalled the med .All this for a crushing depression.Sorry for giving you hope.:(The woman said that my neurologist sometime along with a pschatrist(that left suddenly no warning 1 year ago with no backup Dr)
I'll check in once they piece me back together.