General question about relapses: how many/how often?

[zoefromsussex]

I read that the 'average' person with ms has around 1 relapse every 18 months. Now I realise that there is no such thing as 'average' when it comes to MS so I was curious to know how many definite relapses each of us has had and how often they occur?

It would interesting to know if dmd's make a difference but I guess there's no way of knowing for certain since you don't know how many relapses you would have WITHOUT a dmd!

Personally I have had two bouts of ON which can definitely be counted as a relapse but I'm not so sure if I've had any others. I have been pretty certain that I've had a few flares but my latest mri does not back this up.

I'm resuming copaxone soon but with mixed feelings to be honest given the fact that I might not even have any relapses again!

[zoefromsussex]

I look back and can recall various bits & bobs which should probably have rung alarm bells  such as a numb arm here or a weak leg there but my gp always explained it away wth 'trapped nerve' or 'anxiety'...I had eye issues too but had got to the pont where I assumed everybody had the same!

[TLC_31]

I'm not sure why a nurse would refer to Rebif as the "gold standard," but it has stood the test of time with a good safety profile, as have the other interferons such as Avonex, which I use. (Copaxone is time-tested as well.) The side effects vary from patient to patient and are unfortunately intolerable in the long term for a few, but there is no free ride, and in my case they were soon easily mitigated.

My pre-diagnosis events, the likely relapses, usually involved vertigo lasting for a few days. There was one time my ears were ringing for a few days with no explanation, other times when the fatigue was unusual, or my eyes difficult to focus. The onset of the disease, although I didn't know it at the time and the PCP or neurologist didn't even mention MS, was numbness and tingling in my right leg. The relapse that led to diagnosis involved weakness, lack of coordination, and heat sensitivity among other things.

[zoefromsussex]

What side effects did you get? I started Copaxone last year but had to stop after less than a week because I couldn't sleep or eat, had night sweats & palpitations and was really jittery. The neuro says it might be 'second time lucky' so I'm trying again! They've offered me diazapam to counteract the jitters but I'm not keen.
Well, one relapse every 36 months instead of every 12 is very good! I guess its hard to tell though since none of us know what relapses we'd have without a dmd. We just have to trust the dmd is helping, I guess.
I don't know how many lesions I have because it's not routine to tell uus in the UK. All I know is I have lesions on my brain & spine. I'm pretty certain I'm getting more than one relapse a year at present (but my mri does not back this up!) so a reduction would be welcome!

[Pretty521kitty]

I have only had one full blown attack, although in the last 5 years I had symptoms that were definitely flairs. Just had no idea what they were. Randomly collapsing in my grandmother's basement with no explanation. I had a gash in my scalp when I woke up on the floor rather confused. Nasty bruise on my chin as well. I had my head stitched closed in an urgent care facility.

Anyway, I currently inject Copaxone daily. Nothing but 1 flair so far. Lasted 12 hours. No enhancement of any of my 15 lesions in my brain / spine. I see a team of MS specialists at NIH. Their care is free because I agreed to let them use all my data, test results, anything really, as research for future treatments. What was explained to me about my "moderate" case of MS is that they would normally (given my MRIs and spinal taps etc) expect would be a relapse roughly every 12 months. What they think I can realistically hope for with Copaxone is a relapse about every 36 months. I just said GIMME THE SHOTS!  I was sick for a good 4 weeks beginning the treatment, but then I adjusted to the side effects quite well. The symptoms I was still experiencing disappeared for the most part, and I no longer experience ANY negative side effects of Copaxone.

[zoefromsussex]

Thanks for your response. So in your case the relapses have definitely decreased with a dmd. What one do you use? My ms nurse tells me that Rebif is the 'gold standard' but I'm put off by the potential side effects.

In the years before your diagnosis what kind of relapses did you have? I can look back and remember a few instances of a dead leg or a numb/tingly hand but it was never anything I found bad enough to worry about.

It's certainly a weird condition to have because of all the uncertainty, isn't it?!

[TLC_31]

After diagnosis and starting treatment in spring 2004, I have had two relapses warranting three days of Solumedrol plus a prednisone taper. Those were in summer 2004 and early 2006.

For several years prior to diagnosis, I would essentially have a relapse every year or two, although I didn't realize what it was.

So yes, I do believe the DMD, combined with a generally healthier lifestyle the last 10 years compared to the previous 10, has made a difference for me. I hope yours makes a difference for you as well.