Multiple Sclerosis (MS) Support Group

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Brain & Nervous System
/ Multiple Sclerosis (MS) Support Group

Anyone not DX started meds?

stayingpositive2
stayingpositive2
Anyone else not yet diagnosed and taking meds? MRI shows lots of lesions so Nuero basically said I have CIS and 75% chance of it devoloping into MS. They have done studies with people not yet diagnosed and started treatment sooner. It was almost 3 times as long before they had another relapse that could give them their definate dx. It seems as though when I asked for advice if I should start taking copaxone before dx I had alot of comments saying no. But I also see alot of posts stating that they wished they were diagnosed sooner so they could have started treatment sooner? Went to see my OB for annual exam and she recommended I start treatment also because its better to start early. Her nurse's best friend had MS and she also recommended the same thing.

So just wondering if anyone not DX yet is on meds? Or if you are DX, would you have started before if given the opportunity?
deleted_user
deleted_user
I actually started a few scripts she was testing me with. One of them didn't do anything & the other one I was allergic to. After another MRI with more lesions she had me start Copaxone. I was on it for almost a year. I had 3 episodes where I would have an allergic reaction to it. Get it? I am allergic to ALOT of meds. It's like my body just rejects everything.

It is really up to you. I took Copaxone for 8 months & then she dx me. I have also heard that the sooner you start a treatment the better. Do your research though & read every type of medicine there is & their side affects!! Also don't be afraid to ask your doc questions!!

Good luck & best wishes!!
deleted_user
deleted_user
I say start as soon as you can. Any pro-active step that you can take to protect your health and your brain seems like a no-brainer to me.
lchoppel
lchoppel
I too have noticed that some folks here have started taking a DMD without a formal dx. I found it strange, but I guess that is how it works sometimes. One of my doctors wasn't ready to say my problems were MS but he was willing to start me on Copaxone? I thought a dx would go hand in hand with a DMD script, but I guess I was wrong. Good Luck, and if you can start without a dx, why not? I too wish I had started years before my formal dx came, maybe I would be able to walk now.
deleted_user
deleted_user
My dr (Dr. Lily Jung who is the head of neurology at Swedish Medical in seattle, wa) recently gave a presentation where she talked about giving DMDs to patients that have "possible" MS. She said that it is still controversial for many drs.

She compared HIV/AIDS to treating possible MS/full blown MS. She said that a dr wouldn't wait to treat an HIV patient until they have full blown AIDS and that she believes that if a patient has the proper prerequisites for MS that you shouldn't wait for them to develop full blown MS, either.

You can choose to take the meds or not. Keep in mind that on the internet you are going to get a lot of opinions based on personal experience, not science.

So, my personal experience....if my dr (who i trust completely) told me to take it I would. If I wasn't sure if I trusted my dr then I'd contact a dr at a place that I kNOW is good...like Mayo clinic or Swedish center and do some research. TALK TO YOUR DR and ask them what the benefits vs. the risks are.

disability from MS is caused from lesions. It is imperative that you slow down the progression of the lesions. If it is clear that you already have CIS then the injections may slow down whatever is happening. Find out what the risks are then decide for yourself.

We can give you our opinions but ultimately only YOU can decide if you are willing to do whatever you can to stop what is happening to you or if you will choose to wait and see what happens.