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Hello you guys - I'm new here!

PostPosted: Tue Oct 23, 2007 8:42 am
by ssmme
It's been a little over a year since I've been diagnosed and I still keep looking over my shoulder thinking my neurologist must be talking to someone else. I got the news right before the Tovaxin IIB trial got underway and was a prime candidate. I had my blood drawn and lucky me I had the t-cells needed to make the vaccine. It sure was a bitter sweet moment. Yeah I'm in the trial but guess what -- I really do have MS. I've never been on the CRAB drugs and hope that Tovaxin works out and I can stay away from them. I've already finished my 6 months of injections and am now being monitored for the next six months. Come March 1st of 2008, if all goes well, I can go on open label. I have no idea if I'm getting the drug or placebo. I feel the same as I did 6 or so months ago with no exacerbations since I began the trial but how do I know if that's just the way my MS is or if it's the vaccine. BTW by saying I haven't had an exacerbation doesn't mean I'm symptom free. My left side is much weaker than it used to be. If I get overheated my left leg gives out. My left arm/hand tingles frequently and sometimes I'm so damn tired that I can't get the fog out of my head. But I do have good spells where sometimes I go several days without even thinking about having MS. Maybe Tovaxin will allow me to have more days like that.
Anyhow, I guess this is my "coming out" message. Hello to all you fellow MS'ers!!


Re: Hello you guys - I'm new here!

PostPosted: Tue Oct 23, 2007 3:14 pm
by Lyon

PostPosted: Wed Oct 24, 2007 5:38 am
by TwistedHelix
Hello ssmme,
Welcome along for the ride, I hope the Tovaxin makes it a smooth one for you,

Thanks for the encouraging words!

PostPosted: Wed Oct 24, 2007 7:53 am
by ssmme
You guys are great! I think I really do need to feel as if I'm part of a community here. Back before MS, I had triplets and I remember always feeling like I was part of a carnival act and it felt wonderful to be around other families with multiples. It made me feel like I was around people who knew where I was coming from and it made me feel "normal". Now that my kids are a little older that's not an issue anymore but since being diagnosed with MS I sort of feel alone and a little similar to the way it was then. I know there are a lot of people living with MS but I don't have any in my extended family and no one outside my family either. I feel alone in a crowd. No one to talk to and compare conditions with. Any way, what I'm trying to say is thanks for welcoming me in!


PostPosted: Thu Oct 25, 2007 7:41 am
by TwistedHelix
Hi Marcia,
I think you hit on a very important point: we all need people to talk to and discuss how we are feeling with, and it's absolutely great to have friends we trust and can confide in, but there's a killer response you sometimes get from people who don't have MS which is guaranteed to make me close down and feel even more isolated – it's a simple " I know what you mean". As soon as I hear that, I have to fight the urge to shout at the top of my voice, " No you don't!! How dare you assume you have any idea what this is like?!"
Well that's where the people here are so unique: whatever your problem, whatever your experience, there'll be someone here who really does know what it's like, and that's priceless,

PostPosted: Thu Oct 25, 2007 12:47 pm
by AllyB
Hey Marcia

Welcome to the site - Dom has absolutely nailed it - that connection with others who really do understand is priceless!

I think that it is great that you are in the Tovaxin trial and I truly hope it goes well for you.

I also hope that you enjoy the site as a source of information, news, and most importantly, that "give and take" of opinions, suggestions, compassion and friendship that I know you will find here.
All the best.