Good for you laura, for taking such a proactive health stance w/the diet and exercise. Wish I would be more consistent w/both of those topics.

Keep us posted on how your'e doing and esp how you are feeling. (hugs)

Laura, I hope it goes well for you!

You are doing great taking care of your self in diet and exercise and for quitting smoking. Keep us posted in how you are feeling since stopping Copaxone.

Wow, a lot of feedback, thanks all

I really truly feel that this is the best for me at this time. I'll have to look into LDN. I know a compounding pharmacist that could probably do it, it's getting it prescribed that can be challenging.

I'm going to miss questions/comments (and I apologize if I do!) but let me begin by saying, stopping was both a feeling of being elated and a feeling of dread for me.

I have to put it into perspective. What was I doing 5+ years before I was diagnosed? I was chewing back OTC pills for what I thought were migraines. If you ask me, I've probably been living with MS a decade or more, but that's just my humble opinion. I've had neurological incidents as far back as 10 years ago. Just none were crazy enough to get stubborn me to a doctor.

What finally got me to the doc was an accumulation of symptoms. I had so much inflammation (I figure) that it was like a slowly filling bathtub. Eventually if you don't drain it, it'll overflow. Mine almost did. Steroids fixed that.

Then 2 months later, back I relapsed in a period of great stress. Just after I'd started my needles, but as many of us know, Copaxone takes 6+ months to begin "working".

Anyways... my body tolerated Copaxone amazingly well. I had the occasional bruise or bump, to be expected. The shots stung. I never pre-medicated, iced, heated.. did my shots manually.

Then suddenly as I said, my body hated this drug. The bumps and stuff went from "it'll eventually get better" to "it'll eventually become hell". My breaking point was honestly when I could not walk on my leg for 5-6 hours after the thigh injection. I knew things were getting bad anyways when my hip shots, notoriously my 'vacation' shots, were even causing worse reactions than normal.

Cherie, I will not do an Interferon. I'll go back to Copaxone before I do the Interferons. I'm not down with the flu like symptoms. I can think of nothing worse. My colleague is on betaseron and says, "I inject myself with the flu nightly". She's been on it 5 + years. No thank you.

So I'm going to wing it, and perhaps consider LDN in the meantime (will I be accepted into the family!?!!).

My MS day to day is like one nightmarish headache that doesn't subside very often. Before I quit smoking, I felt almost 100% perfect, save for the mouth burning. Go figure huh?

Anything important I missed, toss it out. I do appreciate all the support again

Laura, have you received the new Copaxone with the smaller needles? I have heard, and it's only hearsay, that they don't leave the big welts because the needles are smaller in diameter. This way the medication goes in much slower, even with the auto-injector.

Personally I think they might have changed the Mannitol in it and the source of it again, but that is definitely just my own opinion.

Whatever you do, it's the right decision for you. Never doubt yourself. Looking back never helps, and no one can look forward into the future. We have just today to think about and that's enough.

aww laura

I whole heartidly agree with you. you CAN reach a point of quitting. you CAN kill love. You can beat a dead horse. it wont get up, but you can beat it. I am so happy that you have come to a place of understanding and care in your life. You are NOT quitting on fighting MS, you are simply shifting gears.

I have been on Copaxone for a long time now. BC (before Copaxone) yes, I had ALOT of inflammatory issues, and clearly there was something wrong with me, BUT I had some energy. I had some sensible life to live. I was able to be up and about. it took me a full year to get used to the copaxone, and it was a rough year for me. I lost my energy, I lost my drive, I feel sluggish, and drained all the time. I dont have the energy to go on vacation, or to do the things I considered a "normal" part of my day. The lumps were all but gone, and then...they changed the formula on the mannitol. Now I am back to big lumps, and welts, and it STINGS! I have changed my diet, and missed very few shots. My MRI remains stable, and while my lesions have not increased, they have not decreased either. They consider that 'stable' and tell me thats the goal. Well, would it have stayed the same OFF the copaxone? I dunno...just many of the questions that run through my head.

you are not alone sister. I too am standing in the line up of folks wondering if all this pin cushion treatment is worth it. If my MS was out of control, and I was collecting lesions like a child with baseball cards I think i would cling more tightly to my needles. For now, I am lumpy, bumpy, tired, grouchy, exhausted, and kinda fed up. I am on the fence, and may someday follow you off this pointy surface.

Let us know what you decide and how it turns out.

Totally agree it's a personal choice for each person. When the med becomes that bad - totally agree with dropping it. Hope whatever you do next works out for ya.

There are some days I wish I wasn't the human pin cushion , but until copax - I was having back to back flares. Still not sure if it's the med or just the way my MS would've gone, but will keep poking away. If the copax ever stops working, not sure if I'd do any of the stronger meds with all my wonky reactions to meds.

Hang in there!

Laura - I am proud of you for being proactive with your health. That is awesome.

I too did a modified Swank diet and found I felt so much better. I kind of fell off the bandwagon and noticed a change in how I feel. In fact, I got my book out the other day to plan my menu based on the diet as I know I felt better when I was doing it. LOL

Being on C can be rough, especially that 1st year. There are other DMD's that you may be able to tolerate much better. I stopped shooting in my thighs a long time ago and just recently, temporarily, stopped my arms. (Spasms & C shots don't mix nor do lack of grip strength in the weak hand. LOL).

All of this is a personal choice and it sounds as if you made a solid decision and really thought this through.

Hang in there! You know we are all here to support you in your decision.

Lady, Canada will not get the 29 gauge needles until this summer at earliest according to Shared Solutions.

I have the autoinjector. Tried it 4 times. Hated it. It was more painful than injecting manually.

I have no trouble with injecting. I'm fine with that. It's the after-effects. Risk versus reward. The risk was not worth the reward for me.

Oh and I know all about eating something outside the diet after you've been eating healthy for a while. You feel like utter crud! LOL.

Hi Laura! I hope you are doing well. I'm off the Avonex until I can afford my deductible. I do plan on going back on it, and in the meantime, I'm doing what I can. I wish I had your discipline when it comes to exercise, but I don't!! Yoga I can handle though.

Right after I stopped it I had a burst of energy and I felt great. Now I'm feeling pretty lousy though. I have had some guilt that I wasn't doing anything for my MS, but not so much. Like you said, I've had MS a lot longer than I've been on a DMD, and it's all a shot in the dark anyway.

I totally agree about diet too. Once you're used to it, eating like crap makes you feel terrible. Ever since husband had a heart attack, before my MS dx, we've been pretty much following the American Heart Association diet. Every time I crave a Big Mac and eat it, I feel lousy. Also, to Husband and I, EVERYTHING tastes too salty now. It's a good thing to get used to, and I'm glad our bodies adjust like that--it makes it so much easier.

I want to hear about how you do without Copaxone. I'm very interested. If you could, pass me some of your exercise advice! I cannot lose weight, I'm underweight already, but I'd like to get stronger. Toss some of that discipline my way!