You'll get no argument from me, Cindy. I tried Copaxone for 10 months. I had no side effects but I was, like you, still progressing.

Have some LDN. It's not a cure but it might make you feel better. I believe it's slowed or stopped my progression.....and if I think it's so, it is so.

Good luck Friend, I wish you the bestest.

Thanks, Sal, I just want it to stop! Even if it would stop right here, while I can still move just a little. Damnit, I am just so sick of being stuck and dragging everyone down with me. I'm in a bloody panic all the time to do everything while I can do it, even sort of, just to do it. I'm terrified of what another year of this will do. Everything I hope for is a race against this thing. It's literally tiring to figure out how to do stuff all the time. I just want to get on with it already. I guess that every chance I get to do something feels like it's probably the last one.

I ask a serious questions what is the youngest you hear of someone
getting MS. My friend is a newscaster here,she was 20 when she was dig.
she has so far stayed strong,she has 2 sets of twins. She's very tall
and thin but told me you better have good insurance. We try to help out
with her kids but she and her husband have been able to seen them to
camps,there so close in age. And yet i have another freind who has gotten
so ill and if her family didn't help her i don't know what she would do,she
comes from a big family. I could since my husband passed away it is hard,
and i'm very sincere about this. Although this may not be the time to
ask Sue

The youngest I've heard of is 2 yrs old, but there was rumour around about a year ago that mentioned a 6-month old.

Cherie

For your response i will go read all the MS posts. Sue

Who was it who said.."The only thing to fear is fear itself" I'm older than you, but I stopped fearing what the future would bring when my future started getting shorter.

I still get down, as you know, when I realize that this is my life now and that I'm not going to get better, and never again, will I be able to do the things I once did as a younger, healthier person.

I have found that I am more content now, though, since I stopped fighting it. It seemed like the harder I fought the sicker I was. I seem to have platteaued now, in my illness. I know I'm going to keep getting older but I hope that my disease doesn't get any worse.

Do you know what "go with the pain" means? I used to have terrible ulcer pain and when I was in the deepest pain, I would take a deep deep breath and then let it out, say to myself "All the pain is now leaving my body" with every breath. After about 10 minutes or so, the pain would be gone.

I guess that's what I did with the MS...took a deep breath and said "what the hell" LOL! With the pressure of the fear and worry deminished, the MS doesn't seem as bad. I know, it's all in my head...well dammit, it is.

Take a deep breath, Cindy.

So Cindy, your coming over to the darkside with me

I'm sorry, but I really don't believe the DMDs work, yep, I am very skeptical. Since starting to post on MS boards a few years ago I never even knew some thought negatively of you for not using the drugs....what an eye opening experience it was the first time I mentioned I have never used them .

Now, I just don't care if some one disagrees with my choice

AMN, please refresh my memory, if you don't mind.....When were you dx'd and have you used any of the other DMDs?

Sue ~ pediatric MS is very real and probably the earliest age that LadyExpress gave is correct.....Mind boggling isn't it

Sal, your mindset is genuinely how I have lived my whole adult life. Things have always rolled off my shoulders quite easily. This thing is so different every day, and although I'm an especially spontaneous soul, I'm also a meticulous planner. I don't know why, absolutely nothing ever comes together with the plans. I do take most everything in stride, in fact, perhaps a little too lightly, but this is simply sucking the life out of me.

Snoop, I was dx in '94 but it began in '80; the '94 attack actively lasted 22 months. I was on Beta for a few years and it was a disaster, interferons were ruled out for me. I've been on C for 6 years and it has almost directly conincided with the beginning of the aggressive progression. My neuro mentioned SP last fall and asked me to go get fitted for a power chair before I can't be sure of what is and is not a good fit. That was a little freaky, but I dealt with it.

Sue, I've also heard of those rare cases of tiny kids. It's just remarkable how this freakin' disease reaches so far and wide with no explanation.

Cindy,

As Sally mentioned, why not give LDN a try, if you haven't already?

I've had MS for over 16 yrs, and was in a downward spiral. I had a bad paralysis (spinal lesion) attack that I didn't recover well from, and then was having back-to-back attacks for many months. I really felt like I was dying most of the time.

I've been on LDN for 26 months now, and it not only significantly improved MANY difficult symptoms, but my EDSS dropped by one point within 9 months too. I have remained very stable since I started on it.

It doesn't work as well for everyone, but a lot of people are reporting considerable improvement. What have you got to lose?

Cherie

I'm going to try to get LDN, Cherie. Everything I've read points me in that direction for the next line of defense. I don't know how well my neuro will go along with it, but I think she'll be willing to try. Right now, I'm taking a couple months off from everything. I have a trip planned and don't want to start anything new until I get back.

I'm glad to learn that it's going well for you, it's very encouraging to hear. Like you said, a lot of people do well on it, and I've never had any substantially negative reaction to anything but interferon.