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Old 01-03-2009, 11:04 AM #1
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Hi and welcome,
I'm glad you reached out to us. The folks here are a wonderful source of support as we all try to navigate this miserable disease.

FWIW I hate that saying about "MS doesn't have me"...it sure as $&!# does have us! I think the best we can do is live each day as it comes, continue to proactively plan for our unsure future and hold out hope that we will have many good times in the years ahead.

I hope you feel better soon. Jules
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Old 01-03-2009, 11:34 AM #2
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It sounds like you are going through a very difficult time, Thumper.

I remember saying that I just felt like "a non-gendered ...(blah, blah)... lump of pain" for a period of about 2 years, and by that point, I really couldn't see a light at the end of the tunnel. I did find the right drug for me though, and things turned around enough that I could see living beyond only the minute I was trying to struggle through.

It is going to take time to adapt to your new reality, and to find what works for you as an individual. Just keep taking one step forward until you find that, and get through this difficult transition.



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Old 01-03-2009, 11:46 AM #3
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I'm sorry you're having such a hard time right now. When things are not going well it seems like it's going to last forever.....but it won't. If the Copaxone isn't the DMD for you then keep trying until you find one you can tolerate.

I took Copaxone first and it didn't work for me, either. Then I was on Beta for a while and it made me feel terrible. I'm on LDN now and it's worked wonders for me. So, you have to sort out the ones that don't work till you find one that does. The side effects of some of the DMD's are worse than the actual disease itself.

You've come to the right place, though, to vent your frustrations and find friendship with people who actually understand what it's like to have MS. I hope things get better for you. It's a slow process but it'll happen.
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Old 01-03-2009, 11:53 AM #4
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We must have been separated at birth! I, too, have always been stubborn, independent, not wanting to ask for help for fear of sounding too whiney...Fortunately, I come from a family of stubborn Norweigans who are even MORE stubborn than I ...
MS has me, too..I slap it around a little, but it has me. I hope you and your neuro can work out a treatment that will treat you more kindly (and above all work!).
I'd never been much for online forums either, until I was dx'd with MS. I think you'll really like it. It's a safe place to talk about what's up with you, you're life, MS, etc..Such a relief to be able to talk to someone about this stuff...And you'll never find a greater bunch of people!
Just hold on..You're not alone!
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Old 01-03-2009, 01:02 PM #5
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Hope the next DMD treats ya better.

Can totally relate to what you posted. I'm a "creatively independant" (aka stubborn ) person, and I often feel like I'm whining. But here, everyone understands the ups and downs of this wacky thing.

Totally hate the phrase "MS doesn't have me". It's more along the line of "learning to still live life despite it".

Hang in there, and we're here if you need support or if you need to vent.
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Old 01-03-2009, 01:03 PM #6
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Sorry you are having such a rough time. I totally understand how you feel about trying to find the right treatment. I went through copaxone, betaserson, and tysabri all in one year. Hope you find the right treatment for you.
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Old 01-03-2009, 01:21 PM #7
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Eeek, as if a recent diagnosis isn't enough to deal with, that Copaxone reaction you had sounds incredibly scary. I'd have freaked out. I'm glad you made it through ok and got off of it. Don't take it as a defeat. Perhaps the Interferons will work wonderfully for you.
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Old 01-04-2009, 12:14 AM #8
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Aaahhh.."Creatively Independent"..I like it, Finlady! I must replace the word "stubborn" with it now..
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Old 01-04-2009, 12:23 AM #9
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hi thumper,

i'm really sorry that you're having such a hard time right now.
i think part of being independent is giving yourself permission to ask for help.

i hope each day will bring some improvement.
glad to have you here.
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Old 01-05-2009, 12:06 PM #10
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Thumper, hang in there. I've been lucky. I've been on Copaxone since dx in 8/05 and have no reactions to that, but have gone through a lot of meds to tx my major symptom-pain. Just when you think something works....Anyway, my mantra is adjust and adapt. It doesn't mean giving in to MS but it helps with the rollercoaster ride of MS. I'm glad you found us here. Hang in there and don't be afraid to post. I'm fairly new this site and had never posted in a forum before. There are some wonderful people here at NT. Hope you feel better soon. Hugs and doxie kisses
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