Confused!!

Hello everyone… I was diagnosed with RRMS in April 2010, and it has taken me since than to accept my condition and begin to understand it. I began DMT in September 2010. Betaferon and I think I had a relapse 4 weeks ago which lasted approxiamtly 3 weeks… How will I know if I am having a relapse?? My symptoms were the following: tingling in legs and feet, numbness, left side of head was sore, very unbalanced when walking. How will I know if my treatment is right for me?? Thank you Dee

Hi Dee.

A relapse is anything neurological that lasts at least 24 hours and can’t be explained by a virus or heat or anything else that is non-neurological. So, based on what you said, it sounds like you had a relapse. The good news is that it only lasted 3 weeks - that’s pretty good going.

DMDs (disease modifying drugs) like Betaferon don’t stop relapses entirely. They reduce the number we have by 30% on average. They also reduce the severity of the relapses we still have.

How do we know if they are working? I’m afraid we don’t. The only way we could ever know would be to have an identical us doing exactly the same as us with exactly the same MS who doesn’t take the DMD.

I’m a fan of DMDs. The 12 months before I started on Copaxone, I had 4/5 relapes. I was on Copaxone for 4 years. I was relapse-free for 3.5 of them. Then my neuro told me to come off Copaxone - I had 5 relapses in the 12 months following that. I’m now on Rebif. I’m still relapsing, but I guess it’s too early for Rebif to have kicked in properly. Saying that, this bout of vertigo isn’t all that bad - perhaps it would have been worse without the Rebif? But there is no way for me to tell.

Make sure that your MS nurse knows that you had a relapse. If you have another in the next year or so while on Betaferon, you may need to try something different. It’s possible to develop anti-bodies to DMDs which reduce their effectiveness - when that happens, it’s time to switch.

Hth.

Karen x