Newly Diagnosed - How do you choose your treatment?

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Newly Diagnosed - How do you choose your treatment?

Postby JJ84 » Mon Sep 03, 2012 11:33 pm

Hi all! After 2 bouts of optic neuritis in the last 3 years, and 2 lesions on my brain i have recently officially been diagnosed with MS just shy of my 28th birthday :(
I had a course of the IV methylprednisolone a few weeks back, and see my neuro next week to discuss what treatment option i elect long term.

She has given me a few options - do nothing for now, tsyabri, avonex, betaferon, copaxone, rebif.

how on earth did you guys make the choice to start with? i don't even know what to base it on... i am so overwhelmed :( any help is appreciated. thank you!
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Re: Newly Diagnosed - How do you choose your treatment?

Postby daverestonvirginia » Tue Sep 04, 2012 7:21 am

I guess you could do what I did, spend some time doing research and than start all three things I came up with. Copaxone, Best Bet Diet, and Vitamin d/fish oil. Of course chaning the way I eat was the hardest at first but you get use to it. Seven years in with no symptoms at all.
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Re: Newly Diagnosed - How do you choose your treatment?

Postby sophie447 » Tue Sep 04, 2012 4:45 pm

I am very new to this as I have only been taking meds for 6 weeks, but I hope my aswer can help you move along. The way I felt about choosing was pretty much i-nimi-nima-nimo! :-D Please forgive the spelling and the joke if you feel sensitive right now. To sum it up, the choice was very hard to make, and there will never be any way of knowing if I made the right one.

For me, it was about choosing the least of the evils. I didn't want to suffer the side effects that come with the interferon family. My life is too active, too interesting and too much fun to give up 2 or 3 days of every week to side effects. But who knows, maybe I would have had none. The depression stuff frigntened me, I tought having MS was depressing enough.

I ended up choosing Copaxone. I will probably suffer lipoatrophy that will leave permanent marks on my body as I am a good candidate for that, being a woman and being thin. But I am hoping that I will not be taking it for too long as BG-12 may be out soon and be more effective.

I still think that doing nothing could have been a perfectly good choice. I just tought starting DMDs MIGHT slow down the disease and allow me to keep enjoying my active life as long as possible. Many people on this forum manage MS with diet, antibiotics or other regimens. If i had been more knoledgeable about those alternatives before starting meds, maybe I would have made a different decision and would not have felt I had to do 'something'.

One very hard aspect that people seem to seldom talk about, is the daily reminder of the disease that might cripple me one day. I suffer almost no symptom and was able to forget about the disease when I wasn't taking meds. Now, every morning before I start my day, I think about it.

I suggest you take your time. And remember, you can take it day by day. You can alway's change your mind if your choice ends up not suiting you.

All the best

Sophie
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Re: Newly Diagnosed - How do you choose your treatment?

Postby NHE » Tue Sep 04, 2012 11:52 pm

JJ84 wrote:how on earth did you guys make the choice to start with? i don't even know what to base it on... i am so overwhelmed :( any help is appreciated. thank you!


Here's my story... avonex-f5/topic16456.html#p163704
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