I can't decide to medicate or not

[HereIam]

Go on Copaxone. Don't even think twice about it.

I was undiagnosed for 15 years and when I got a diagnosis, I was put on Copaxone and was on it for 4 years, it was very tolerable and part of my daily routine.

Unfortunately, it was all too late, as I had already converted to Secondary Progressive MS. I believe had I been diagnosed earlier and on Copaxone when I was still RRMS, this conversion would not have occurred.

You do not want to end up where I am now.

[salamandertom]

I personally don't think the medicines do much to slow progression and little to help with flares. BUT, what they do do is enough for me. It is better than nothing. My neurons are dying, and I like my neurons. So, I will do anything to try to help those badboys out.

I just started Betaseron last week, and I consider myself lucky to not have any reactions so far. I have however been in a flare (my first) since late November and not had a good day since. So, if this medicine can help my neurons - even a little or there is even a CHANCE they can help - and can shorten flare time then I am in. It is better than doing nothing. At least for me it is. If the meds start making me sick and none are working then I will reconsider, but for now they are my best hope.

I think it is a personal decision and I respect any choice any patient with this sucky disease makes. HUGS and good luck.

[Just a small town girl]

I was in this boat. I've only ever had two attacks and my neuro described my MRI as very mild and that we were catching the MS very early.

Choosing to medicate is very personal. For me if the DMDs are the only thing I can do to slow this down, then my choice was easy. Especially in light of the oral meds with an efficacy rate that's 50% higher than the injectables.

It's been 4 months now with only a pseudo-flare that lasted for about 6-8 hours. I get my follow-up MRI in a couple months and both my neuro and I are excited to see what's going on.

[Pamalam]

I have been newly diagnosed with MS, my doctor has said that right now my case is very mild however he highly suggests going on treatment and together have decided on Copaxone. The thought of it scares me to death and wonder if going on medication right now is the right choice. I would really like other peoples opinion on this. Thank you.

MY SON & I ARE IN THE SAME BOAT AS YOU. HE WAS DX LAST WEEK. I WAS DX YESTERDAY. YES, WE BOTH KNOW THAT IT'S RARE BUT IT IS WHAT IT IS. HAS ANYONE OUT THERE DECIDED TO TREAT SYMPTOMS ONLY & PASS ON ALL THE INJECTABLES?

[sydlerobinson]

I was diagnosed a year ago in May and started Betaseron injections the same month. It really wasn't a hard decision for me to go on the medication. I talked to some other people who are on it and have been since it was first introduced and they are functioning people who do have flare-ups now and then but are glad they went on the meds. I was pretty much set in my head that I would go through whatever the injections threw at me in the beginning if it was going to keep me able to walk and function longer. I was told that the medication could make me sick in the beginning. My biggest fear is having to be in a wheel chair some day so I just suck it up with the painful injections every other day. Good luck!

[Bob698]

I think its proven that the meds won't work if you don't take them.

Its possible you might have to try several before you find what fits.

[PittyPat]

Meds?

I was dx'd 6/2008 at the age of 62. After 44 years of non-top working, was happy to turn in those retirement papers. Neuro started me on Betaseron; had very bad reaction to it; then Copaxone for the last year and a half...funny thing is I have continued to have relapses just like clockwork. I asked last month if I could stop the Copaxone and Neuro became unglued...started screaming at me (remember I'm now almost 65) and I told him I knew what I had, however I refuse to give in to it..not in my nature! So, I quit the shots (I'll tell him next visit) and I have never felt better since this all started.

As I told my Neuro, we are not all the same. I am a very positive person, always have been, always will be.

So I say to each his own!

[opiegirl]

I agree with everyone that it is a personal decision, harder for some than others.

I have chosen not to take any meds for the disease or symptoms. My course has been very manageable over the years and whether that was going to be the case with or without meds, is unknown.

I believe you have to do what is right for YOU, and if you realize that you need to do something different than you can.
Good luck with your decision.

[tree1585]

I know exactly how you feel. The decision to medicate is a hard one when symptoms are mild and you feel good. I was recently diagnosed and am about to start Avonex. I'm in the same place you are right now but two years ago my sister was diagnosed. There was a delay in starting meds because her doctor was hesitant. In just a few months she went from where I am to a walker on good days a wheelchair on bad ones. I am thankful my doctor is very proactive. Even with the meds there are no guaranties. Sometimes you have to take a leap of faith. Good luck on whatever path you choose.

[Krysalus]

this is a tough question

There have been a lot of threads regarding this and I read them all. I was dx'd twice. The first time when I was a young teen, there was no treatment available. My problem was largely ignored and I got the reputation for being the family klutz.

The second time as an adult, I chose not to treat this right away. Largely because I have a major phobia against needles and drs in general. I panic at the thought of that shot every time. But I do it because it is the only thing I can do that gives me some control over this dx. A scary flare is what changed my mind. I don't regret not treating it earlier even though my dr thought I was crazy.

It's a very personal decision and only you can make it. I have read about people who wish they had treated earlier and people who have had no change with no treatment whatsoever. This dx is just so different for all of us. There are no clear cut cookie cutter symptoms or answers. I wish you well whatever you decide.

[babygirl_vic]

I understand your worry, I was dx'ed in July 2010, and my neuro didn't give me a choice on what meds to go on. I don't know if it was because of my insurance(state) and he just picked one he knew the insurance would pay for or what. I've been on Rebif since last July 2010. It's 3 injections a week, and I don't get freaked out about the shots because I've had to give several family members insulin shots and I'm fine with giving myself the injections.

But I have experienced the flu-like symptoms and I haven't worked since July, partly because I was hospitalized and couldn't walk at all, and then getting used to the side-effects, which my neuro keeps saying "oh they will get better intime" Which at this piont I myself think he is full of it!!

I saw my PCP yesterday and we talked about changing me to copaxon, we just have to see if my insurance will pay for it and can't change it I've taking the last 2 weeks of Rebif I have(because of insurance again)

I know these meds sound scary and MS is all about "what ifs" Even though these meds won't "fix" your existing symptoms, they will keep others from "popping up". I would suggest going on treatment ASAP!! But pick your own, and weigh your options!!

Good Luck and God Bless

[AshNight]

I agree with everyone that it is a personal decision, harder for some than others.

I have chosen not to take any meds for the disease or symptoms. My course has been very manageable over the years and whether that was going to be the case with or without meds, is unknown.

I believe you have to do what is right for YOU, and if you realize that you need to do something different than you can.
Good luck with your decision.

When were you diagnosed and how long have you had ms for? I am confused about whether to medicate or not too . . .

[opiegirl]

When were you diagnosed and how long have you had ms for? I am confused about whether to medicate or not too . . .

Ashnight,

I have had MS for 20 years, I was 24 when I was dx'd. Thankfully, my course has been a slow one.

In the last two years I have had new symptoms, left leg weakness and foot drop and a consistent numbness in my left hand, I have always experienced weird numbness throughout out my body, MS hug and ON.

I recently went to see an MS specialist (hadn't seen a neuro in many years, feel like they all say the same thing) and had a blood draw to see if I test positive for the JCV. Considering Tysabri, but probably won't do it.

Honestly, I have an issue on how these meds affect other organs in my body and the side effects of "flu like" symptoms seem pretty hard to deal with.

I have been doing a lot of research on diet and autoimmune and that is the direction I am going in, in hopes that I will see improvement. I am also interested in learning more about LDN and Prokarin.

Good luck to you in what you decide.

[twisterred]

It's a personal choice for everyone, but since I want to slow down MS as much as possible, I choose to inject daily with Copaxone.
15 years later, I still inject.
I can tell my MS has affected me, but I know it has saved me from being in much worse shape.

MS can fool us into thinking we are alright when we aren't.
Damage is being done to our nerves whether we are having a flare or not.

No, you won't feel better taking a DMT, but it's investing into the future.
It's not a cure taking these meds.
Yes, you still have to live like you have a disease.
But these meds are tools to help us 20+ years from now, not just today, or next week.

MS is a progressive disease whether you do or don't take action.

Please really consider doing this good thing.

[sallylou]

My neuro gave me a probably diagn. in December, 80-90% and suggested I start a medication. He gave me a CD and booklet, and a whole whack of information, and I decided to start on Copaxone. I had a mild relapse late January, with a small new lesion but it was nothing like the fatigue, weakness etc and variety of other symtoms that I had experienced before, so I am hoping that starting the copaxone lessened the severity of the relapse. Actually I believe that is what happened. Of course, with the new lesion and symptoms, came the 100 percent diagnosis, but in some ways it was easier to deal with, as the progession of visits to the neuro, and reading, learning and reading more made me more comfortable with the life changing diagnosis. I am not going to let MS rule my life, but I do have to learn to live with it. It is wonderful reading and sharing on here.