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#11 | |||
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Elder
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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.
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RRMS 3/26/07 . Betaseron 5/18/07 . Elevated LFTs Beta DC 7/07 Copaxone 8/7/07 . . |
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"Thanks for this!" says: | jeep4wd (04-03-2009) |
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#12 | |||
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Magnate
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Hi, Jim! Welcome to MS NeuroTalk, and we're glad you found us.
Do please keep us informed about your study. I'm so sorry you lost so much while on the placebo. Best of luck to you on the clinical trial drug. ![]()
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Mair . |
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"Thanks for this!" says: | jeep4wd (04-03-2009) |
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#13 | |||
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Junior Member
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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 |
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#14 | |||
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Junior Member
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"Thanks for this!" says: | SallyC (04-03-2009) |
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#15 | |||
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In Remembrance
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Wow Jim, sounds like you,ve been hrough the mill..
![]() Please keep us up to date and thank you for being a lab rat for us.. ![]() In the meantime come into the Stumble Inn and join us for some silly banter, to keep our minds off of our troubles. ![]()
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~Love, Sally . "The best way out is always through". Robert Frost ~If The World Didn't Suck, We Would All Fall Off~ |
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"Thanks for this!" says: | dmplaura (04-03-2009) |
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#16 | |||
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Elder
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Hugs and prayers for you! Please keep us updated on how you are doing.
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RRMS 3/26/07 . Betaseron 5/18/07 . Elevated LFTs Beta DC 7/07 Copaxone 8/7/07 . . |
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"Thanks for this!" says: | SallyC (04-03-2009) |
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#17 | |||
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Magnate
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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.
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2004 to present - Trigeminal Neuralgia 2007 to present - Burning Mouth Syndrome March 2008 - Multiple Sclerosis DX 05/2008 - Relapse 05/2008 to 02/2009 - Copaxone 10/2011 - Relapse - Optic Neuritis developed 9/2012 - Relapse - Balance issues 1 sided 8/2012 - Erythema Nodosum - diagnosed 10/2012, reaction to Topiramate (Topamax) April 7/14 - Raynaud's Syndrome DX |
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#18 | |||
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Junior Member
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Hey Thanks 4 reading and your comments.Will write to keep you up to date on this. Your Canary Jim
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#19 | |||
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Member
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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!! ![]() |
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#20 | |||
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Senior Member
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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....... ![]()
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_____________________________________________ .....Judy SPMS -- FIBROMYALGIA -- Ouch! and Ouch! . |
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Thread | Forum | |||
MBP8298 receives fast track designation from FDA | Multiple Sclerosis | |||
MBP8298 Enrolling Patients in SPMS Trial | Multiple Sclerosis |