Originally Posted by SallyC
AMEN!!

More and more PwMS are coming to this conclusion, Becca. You are not alone and some Doctors are agreeing.

I don't think a study has been done on this AMN, but I have read conflicting reports from the Medical Profession about when or if to start a DMD.

I think it was the Mayo Clinic that has said A "wait and see" approach to the MS Meds is preferrable. The NMSS has stated "the sooner the better", to get on the approved DMDs.

PwMS are taking the bull by the horns and deciding for themselves, despite the fear within of, "are we doing enough and are we doing the right thing"??

I hope this cleared things up for you...NOT!

Thanks! So far so good on the trial! Next shot, May 24th.

No worries, Sal, I'm just as confused as ever.

So....here's my NEW plan.

I'm going to stay on Copaxone for another few weeks (aiming for different injection areas of course) and then, after Memorial Day holiday, will talk to my neurologist about saying goodbye to the meds for a while.

I've been progression free for most of my MS experience (six years). Is that due to the meds? Is it the 'normal' progression of my MS? No one can really say with any certainty.

For that reason, I'm feeling like it's time - for now - to take a pass on disfiguring my body with Copaxone injections. I'm also choosing not to return to interferons and elevated ALT and ASTs. I don't want to harm my liver again.

I'm going to wait. It's just not okay any more for me to endure damage to my body to maybe prevent...damage to my body.

I'm on the verge of choosing to wait until the next drug becomes available. Wait until there's a pill to take. How long is that? 2 years maybe? Wait until I get a little worse, perhaps? Maybe when Shared Solutions experiences a revenue drop they'll pick up the pace a little bit.

I like the sound of that, Becca. I don't give a rip what it does to my appearance (there's no point in worrying in my case), but I am frustrated that it seems like I've only gone downhill this fast since I've been on C. The scariest thing to me is whether it will pick up the pace once/if I'm off it. Then it's another 8 mos. till I reach this level again.

I dunno. I wish they had more concrete evidence or a test that affirms it's doing something. Ugh. This is worse than picking a major, at least then I could change my path in my own power.

I'm not going back to interferons either, it messes me up too much to justify it.

I'd be frustrated, too, AMN.
Isn't it kind of ridiculous to endure chills, body-aches, depression and liver damage on the off chance that the interferons are doing a little bit of good? Heck, maybe even a lot but does it matter? Having a third fewer exacerbations doesn't mean squat without a functioning liver for godsakes.

When it comes to appearances and those copaxone dents - for me, it's as much psychological as it is physical. I may not have had the best body BEFORE all this (and I am 44 afterall [cute, but 44]) but ...I don't like the idea of hastening the ruin of my body... at my own hands. You've said something to that effect in other posts. It's like, I can't deal with the idea that I'm choosing to do this to MYSELF. Somehow it just seems so counter intuitive. Why do I have to hurt myself - alot - to help myself?

Sure there's the long-haul perspective and all that but right now, it's affecting my mental state ....which impacts my optimism, self-esteem, quality of life. Aging is tough enough as it is. LOL

Well, for what it's worth. I get where you're coming from. Me and the old body might just take off on our own a little while, sans meds. See how it goes. If by chance I need to skeddadle back onto a DMD, I'll do it. But I promise not to KICK myself for making the decision to take a little risk and give myself a break. If you do the same, remember to be kind to yourself for making whatever choice you end up making. There are no sure answers with this disease and therefore, never, any 'I told you so's. Not even when we're talking to ourselves (which I do alot ).


becca44

Amen to that Becca! It sounds like you have a good plan. I hope you have a good break and with no or few new symptoms or lesions.

I'll be starting on Tysabri soon, maybe as early as next week... I'm actually looking forward to it, after getting to this point while very stubbornly digging my heels into the dirt. It feels like my body has dragged me in this direction...

If I were feeling well, and having no signs of progression, I'd likely do exactly the same thing you are. Keep us posted, and take good care of yourself!

BTW, I have some telltale Copaxone dents left on my arms, legs and tummy. They have rounded out a bit (Thank you Frito Lay!), but they're still there.

Wiz

So, Wiz, how long have you been shots-free? I remember that you bailed on the Tovaxin thing for the Ty, right? Hadn't you been on Beta for awhile?

Good luck Becca and Cindi on your "just say no to drugs" campagn. Except for LDN and my AD, I've been drug free now for over 5 years.

I haven't had any disease progression or major exacerbations in that time, so mine is a success story...so far.

You may consider adding some LDN, just for grins.

Thanks for the cheers, Sally.