I quit!
 

Copaxone, that is. I'm just so sick of it, I don't believe it's doing a bloody thing for me, and this persistant progression seems to line up with the introduction of it almost to the day!

Six years of nonstop progression and I'm sick up and fed. I'm taking a couple months off of the junk.

I don't blame you. I quit it too. And it only took me 2 months to come to that decision! I couldn't deal with the severe fatigue from it.

See what happens.

Okay, fine... (backing away from Cindy) Don't you think you should talk to your Dr. about it, Cin?

Bringing logic into the equation? Ya think that's going to help? After the week she's had...LOL!

Cheesecake Taffy?

That's why I was backing away from her...I could feel that hands around my throat.

Yum....cheesecake!:p

Meh, I'll tell her next time. She has known for quite awhile that I've had it in my head to do it. She'll probably wish I hadn't but then sock me in the arm and tell me she doesn't blame me. She's a great doc.

Cheesecake on Wednesday.

Cindy won't hurt you, me maybe, but not you! :p

Cindy
 

My best friend has had MS for more yr. then i've know her. If you
need a break or can't stand that stuff anymore (my friendd couldn't)
Im going to stand back by taf and say tell the dumb Dr. I glad i wondered
though MS cause i want you to feel better. I guess step back
more this isn't the time,Taffy get out the chocts to tell you all
i found out today i don't have Lymphoma,and i 60 yrs. old and going
out,step back with a 48 yr. old Dr. Sat. I gave him ahug when i found
out i didn't have cancer. Step back his name is Dr. best and the Dr. who
gave me the news was Dr. Doll. The only trouble Cindy is he is a friend of
my sons and daughter. Is this a bad time to ask if it's ok if i tell them
next week? :eek: get off the stuff i'm leaving byyyyy Sue

I am thinking this as well.........I have to much going on to deal with the crappy days I have with the rebif hangovers......

I dont know if its doing anything anyway or if it just isnt my time to progress...the only real fact is that its draining the bank account and its kickin my butt on tue thur and sat.......

Wait a minute, Sweet Tea, you haven't been on it a whole year yet! maybe switch to something else??

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.:D

Good luck Friend, I wish you the bestest.:hug:

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.

May
 

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

Thanks
 

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" :D 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.:confused: I know, it's all in my head...well dammit, it is.:rolleyes: :D

Take a deep breath, Cindy.:hug:

So Cindy, your coming over to the darkside with me :icon_twisted:

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 :icon_eek:.

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

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.

Just reading this thread has proved what I've already known.....You all are a bunch of really strong ladies... :grouphug:

I have learned so much from you..

(choking...) yep...DM..would you be so kind as to ask AMN to remove her grasp from my throat?

Oh silly Taffy... AMN is just measuring you for a new scarf...

Right AMN??? AMN??? UH AMN???

Gee Taffy, you look good in purple.
Oh, and put your tongue back in your mouth... (some people have no manners)....

(thinking...right a new scarf....is she done yet)

(giving universal sign for choking)

Oh look..... Taffy knows sign language....

Awwww Cindy!
I "think" I understand what you must feel like. Although I am not as effected as you are, I have been very frustrated by the CRAB's. Whenever I've been off of them for any amount of time (when we were trying to get pregnant, or I was pregnant), I almost felt better or just as good from not having the side-effects of the interferons. The only medicine that I feel did anything for me was when I was in the "Antegren" trial, and it just so happened that I was getting the real thing. Now that we aren't actively trying to get pregnant, I think I'm going to go back on Tysabri. I feel like the other meds are like shooting water into my system, but then I suffer with the nasty side-effects and I don't feel like they're even helping me.

Whatever you decide to do, please know that we're all behind you in your decision. Whatever makes you feel best is the answer for you. This is a very frustrating disease, and for many of us hits us in our prime of our youth when we should be enjoying life as carefree young adults.

Try the LDN. I don't see what you have to lose. I just want you to know that I'm here for you whatever you decide to do.:hug:

(((((((((((CINDY)))))))))))

All the best to you now and always,
Chris

Thanks, Chris, I plan to try for the LDN when I finish a long trip in Sept. It may be psychosomatic, but I swear, it's only the 4th day with no shot, and I think I feel better! I'm not as fatigued as usual and it's even kind of warm here.

My legs feel a smidgeon lighter too, but I'm cautiously optimistic that this is just the beginning of feeling better every day.

Here's hoping!


...but my hands are so tired, I fear I may have to release Taffy... but... she likes blue, she said so!

Getting
 

Into the old lady age,i'm thinking there's always HOPE.. Now Cindy Taf
is turning blue :( nope :mad: nope that's :eek: awww poor Taf,
your going to love that whatever she's choking you for. ;) Sue

Cindy,

Glad to hear your feeling better. If it helps I have read many DMD user threads where they do better off the drugs than when they were on them.

Really makes you wonder about drugs that can make you do worse than the natural disease course :icon_eek:

Sure....I don't like blue that much! Your arms must be tired by now.

(Cindy releases Taf and lets the Smurf fall to the floor with a thud.)

With renewed strength AMN goes off to conquer the World!

*stepping over Taffy*

Yes! I'll do it!

I made a huge leap of faith today, I had been kind of on the fence about my adventures this summer, and I made the decision to go for it, do or die. I'm gonna go all the way and I don't care about anything. To lock down the deal, I spent way too much money on a new, awesome set of binoculars, and rain or shine, it'll be me and my scooter against the world.

*pulling area rug over Taffy*

Cool! I can't wait for the final itinerary!

Note to self: Be careful when stepping on lumpy rugs!

Hip Hip Hooooray, Cindy. Go for it Girl!!!

Oops, http://home.earthlink.net/~sal.pal/s...tures/trip.giftripping over lumpy rug on floor.

Oh No Sally...look what you've done to Taffy!

(check out thread in Social chat!)

Cindy
 

This makes me so happy tooo,good for you. I have always said
to be a good Peeping Tom you have to get a awsome set of Binoculars.
And if i was you i wouldn't put that lumpy rug in the truck of
your car neightbors talk. :) Your going to have a good time Sue

(a muffled sound comes from the under the rug) Ya-hoo! Glad you, cough, got off the fence and will, cough, have an adventure....cough...cough...

(she needs to clean under her rugs...dust bunnies.. and 'sweet'...I found a quarter!)

OMG, Taffy!! Did you see what Cheryl did to your beautiful (I think) face? How cruel..LOL!!

Glad you have your Truffles to keep you company under that rug.:D

Taffy pulls herself out from under the rug. "I got a quarter to buy a gumball!"

Cindy is busy playing with her new toy binoculars, looking at the yellow-belled sapped suckers!

Excited that you will be planning an adventure! What direction will you head first?

She's heading WEST! :winky:

*violently snatches quarter*

I'm gonna need that for gas!

Direction. Well, there's this really big lake between me and my route, so I'll be heading south and then taking a hard right. Maybe stalk Wiz and do dinner in TH before I pound some serious mileage. I'll see what CBK thinks.

Oh, day 5 sans shots and I swear my legs feel lighter and I didn't even take a nap yesterday!! I continue to wonder if it's phsycosomatic, but I'll take it either way. Here's hoping!

*raking rug*

Hey Taff, is this yours?

*holding up crumpled Playgirl*