CIS

[ms382012]

Just learned today that I have 2 lesions in the same area of the brain that correlate with some of my symptoms of numbness, trigeminal neuralgia. I don't think my vertigo is related. My doctor wants me to alert him any time I had new neuro symptoms before my next appointment. So still in limbo land but at least I know the source of my numbness. Question is should I start treatment or wait and see?

[MSer102]

That's a great question and there is no absolute answer about what to do. Some of the DMD makers did the research needed to show that treatment at the CIS stage is somewhat beneficial so the FDA approved them for early treatment. On the other hand the medications can be expensive and unpleasant to take and that might make a person not want to take them.

The way it looks to me is that if a person doesn't take them early there's no way to know if they would be helpful. But if they do start early and don't like it they can always just stop. The first way there's no do-over, but the second way there is.

[lstrl]

It's really hard to say since everyone is different, but if I were offered treatment when my diagnosis was CIS, I would have taken it. I wasn't given that option though and then I ended up with a flare that left me jobless and draining every last penny to my name. I wanted treatment before it got that far, but especially with what I know now, I would have done anything to possibly stop the disability that hit me.

Every DMD that I was given info on from my neuro's office has studies to show they were helpful in preventing progression in CIS patients. That won't stop everyone from moving on to full blown MS, but if you can get it under control before it gets to that point, that would be amazing.

[ms382012]

Thank you

My gut is telling me to start as soon as possible. My insurance is pretty good, but I have been shocked before at what it covers well and what it barely pays for. Like my son's allergy shots, which can help save quite a bit of money in the future is barely covered, but expensive trigger point injections once or twice per month for me and only lasted a few weeks... that was covered. How expensive might we be talking about here? I just want to avoid the jaw dropping later...

[lstrl]

For MS drugs, they're covered under the specialty medications. Whatever your copay is for that is what you should pay monthly (or I think some still allow you to get a 3 month supply). If it's too high for you to afford, I think all of the companies providing the drugs have an assistance program. From what I've read, I think you can get Rebif for free, Avonex for $10 a month, and Copaxone for $35 a month with their assistance programs (not sure on the others). As much as the meds cost, they can afford to offer assistance since insurance is paying a ton.

[JerryD]

I am sorry for your situation. As I am always.
I had a friend that was in your position, a few years ago.
Her doctor put her on copaxone, right away. Even though she didn't have a 'formal dx' until a year later. And daily injections didn't work for her. She was miserable. She ended up with a formal MS dx of RRMS and she is on once a week injections, Avonex? I think.
Maybe you could do one of the standard DMD's, first. And then move on to BG-12. Good luck