and I dont mean knitting.

I have been off and on several of the MS meds, and have struggled with them all. I have been on Copaxone for the last 3 years. While I am on it, I am tired, confused, disoriented, exhausted, have horrible skin issues, extraordinary dry eyes, mouth sores, dents, fat destruction, lumps, bumps, and bruises, and lets not even mention that I am feeling like the cure is worse than the disease.

After much research, prayer, and investigation I have come to the conclusion that I am ready to ride bareback thru the world of MS. ALL of my MDs have advised me to keep shooting. They even went so far as to freak out my DH about how much of a gamble it is to lay the needle down. I have included him in the research, and he said "hmm..all of the listed side effects that YOU have, are found on the list of things this shot can cause. no wonder you feel so lousy." Wahoo! I got thru to him!

So, I am tired, I am frustrated, I am tired of being tired, and I am sick of being sick. Doing without the meds, cant be as hard as doing it with the meds.

What say the rest of you? am I crazy? or just fed up?

I quit the C last summer right about this time. Partly because of the side effects, but mostly because my neuro told me that he didnt think any of the injectable drugs did anything. (way to instill confidence doc!)

I had all sorts of annoying side effects from it. I think yeast infections, dry eyes, and dry skin were the worst of the side effects. (especially the yeastie beasties! yuck!) Oh, and the stress of constantly having to psyche myself up to do the stabby thing every night. Annoying.

I've thought about trying another drug, but because my neuro screwed that up for me, I've decided to not do it.

I just wish that Doctor Confidence Ruiner would give me a Rx for LDN. He doesnt think that works either. Since he doesnt think the stabby drugs work, but he'll prescribe them, I dont get why he wont give me the LDN.

You're not crazy, Dej. I think you're doing the right thing. Enough is enough.....and if the meds aren't helping and causing more grief than assistance then you have to do what's best for you.

Does this answer your qwestion?

Hey kid - I understand.

It's a hard decision to make. Do you take a chance that the drugs will slow down the progression and live with the side effects or take the chance that mother nature won't progress without the drugs? It's probably a coin toss here...

You know my story so I won't offer any personal opinions on this subject.

I guess what I need to share with you and all the others on this site are the results of the clinical trials from the late 80's and early 90's. This info might help you make a decision. I don't know. this post makes me think maybe I need to scan all the stuff in from that timeframe so y'all have that information. It's an unbiased ongoing evaluation of the trials. The results helped me make an informed decision at the time.

I understand where you're at. I really feel for you. And I understand your current predicament. It was easy for me initially - no DMD's available in 1988.

What info would you lie me to share? Clinical statistical results from the late 80's/early 90's?. Initial early results for COPI/COPII/beta 1a/beta1b from the mid 90's? Ted Yednock's research into monoclonal antibodies in the early 90's and subsequent trials(Ted Yednock = TYsabri)?

I can overload you with information but I don't think that's what you need. So - I was told I had MS in January 1988. I think I still have it. I saw a neuro last month and he thinks I still have it... I've never taken a DMD (this is a lie - I took copaxone for 2 weeks in 2003). So I'm MS drug free and have had MS for 22 years and I'll never cave in to the stupid disease. Still functional, but this is not a guarantee.

Love ya Dej... You're not crazy. Tell your hubby - neuro's have a motivation to get you on a DMD - regular income for them...


hey - I got 2 more shuttle missions, and possibly a third. STS-133 in November, STS-134 in February, and if Congress says fine then STS-135 in June 2011. We've scaled back so I'm the only COD mission manager now - i get all 3 flights. Gotta love it. I've had MS for 22 years and nobody can tell and I'm having a blast working at NASA. Especially the shuttle missions (the astronauts always sign a plaque for me saying "thank you" for my support).

So what's the big deal with MS or why do we need to take those shots? I don't think we'll understand in this lifetime.

Tom

Layed down my needles 3 years ago Dej and never regretted it. At least I have SOME days I feel pretty good. With DMDs I felt lousy all the time.

I have not made this decision lightly, or half heartidly. I have done my research, and I have seen that when I take (unathorized) breaks from the meds, about 2 weeks in, I start to feel better. My skin clears, I can blink my eyes without feeling like the lid is going to rip off my eyeball. I have energy, I can think again!

I have always said that i feel like I catch on a second or so faster than the rest of the world, yet while on C I feel like I am always standing here going "huh?!" I cant get my brain to work!

I would love to hear Freeinhou's research about C. I know it has about a 30% chance of possibly preventing the next relapse, and should that relapse happen, it has about a 10% chance of making it less severe. well, if I keep shooting it has a 100% chance of keeping me house bound, non driving, and itchy skinned, with a fuzzy head full of stuff I cant do anything about.

I LOVE taking care of my house, but I have felt so crappy I have hired girls to come do it for me. I LOVE taking care of my garden, but I havent dug in the dirt in 2 years. I LOVE driving, but havent felt safe while taking this stuff. When I stop taking it, I am raring to go, and actually want to do the stuff I left behind.

I feel like a quitter. I did massive rounds of Chemo and there was a point to it, and a count down. There was a begining, and an end to it. 5 more to go. 4 more to go 3 more to go. you could take the side effects because you knew there was a point, and an end to it. There is NO end to this! Its like being on permenant chemo! I hate to explain it that way, but the fatigue, the nausea, the hair loss, the damage to my poor little body. I want the courage to just stand up and say NO MORE!

The lectures I have received by the medical community have made me feel like I am letting them down. Like I am quitting on them, and they wouldnt have quit on me. That I am being stubborn, and risking life and limb to simply quit one of the best meds available to treat a disease that many begged years, and years to get treatments for. One MD actually said I was giving up on all those that worked so hard to get these meds on the front line of treatment.

My b/d is Friday. I have an appointment on 7/7. I promised myself that I would figure it out by my b/d and put it into play by 7/7. Im just so tired, confused, wrung out.

its hard to quit. cause I am not a quitter.

I did Rebif for2 years, 2 tries of Novantrone with vomiting, a try of 4-AP. No huge side effects, some nausea, etc., but nothing helped. As a PPMSer, neuros didn't expect them to. Back when I believed I took my Rebif religiously but said to DH, why should I feel cruddy everyday on off chance it MIGHT help me? Now that I'm in a chair 24/7 (could not be stopped) I kick myself for wasting time when I could still walk around by taking drugs that made me feel yucky and wasted time. Honestly, they impeded me more than the chair. Now I take no drugs but am in a chair, neuro and I both know. nothing would have helped. I am still interested in fighting, want to try Fingolimod, it's for RRs, will try to get anyway. It's something for each of us to make decisions on. We are all so different. Drugs are great for some, not for me.

You have my empathy, for sure.

I'm struggling with that issue, also, and add into the mix a personality that constantly asks "what if? what if?" Especially, "what if I make the wrong choice and REALLY screw up my life??"

I still say it's a crap shoot, mainly because the disease IS so unpredictable and individualized.

My Dad had MS over 40 years, never took an MS drug, never ended up in a wheel chair. BUT! I grew up under "Tomorrow might be the day your father wakes up and can't get out of bed." I think of that stupid tv ad for some drug, the one where the stretcher follows the guy around, waiting for him to have another heart attack.

Copaxone was (apparently) causing me debilitating anxiety (and yeast infections--I'm sure it wasn't a coincidence). I took an "unauthorized" break, and my neuro wants me to try again, see what happens, re-evaluate in three months.

I look at those stinkin' needles, and I either see a miracle that I should be accepting, or a snake ready to strike. I keep telling myself, just give it a try. Then: cluck cluck cluck. I get anxiety thinking about the anxiety.

Dej, I can't believe you have stayed on copaxone this long, with the problems you have been experiencing. I think we were dx about the same time and you started copaxone a few months before me. You have certainly given it the "old college try." Maybe, you should give your body a break for a few months without the meds and then consider trying the new oral med once it is approved this Fall.