Sunday, March 2, 2008

What is a relapse?

I have Relapsing Remitting Multiple Sclerosis which is defined by the National Multiple Sclerosis Society as:

* Relapsing-Remitting
Characteristics: People with this type of MS experience clearly defined flare-ups (also called relapses, attacks, or exacerbations). These are episodes of acute worsening of neurologic function. They are followed by partial or complete recovery periods (remissions) free of disease progression.
Frequency: Most common form of MS at time of initial diagnosis. Approximately 85%.


I have never, since the beginning of my relationship with this disease, questioned whether or not I was having a relapse. I always KNEW. There could be no denying it. From the very first time, when I went numb from feet to waist, up until the last attack back in May of '07 when I suffered bladder and bowel symptoms along with numbness in my left leg and torso. There has never been a question of "is this MS?"

But now, since I have been on this Fingolimod trial, I am wondering more and more about just how mild a relapse could be and whether or not I could recognize it.

From www.mstrust.org.uk:

Relapsing/remitting

Initially, about two thirds of people have relapsing/remitting MS. They experience relapses on average once or twice per year, with good or complete remission in between. However, there is a tendency for symptoms to worsen very gradually over time.

relapsing/remitting MS - relapses once or several times a year with good or complete remission. Tendencey for symptoms to worsen over time.

A relapse is a significant worsening or a re-occurrence of a symptom, or a group of symptoms, lasting for more than 24 hours. Relapses are also referred to as exacerbations, episodes and attacks. Symptoms usually appear over a short period of time (hours or days), but can last for anywhere between a few days to many months. The severity of a relapse can also vary from mild to more severe.

A remission is a period of recovery, when symptoms become less severe or disappear altogether. Periods of remission can last any length of time, sometimes even for years.


So, now the question is, could the numbness and pins-and-needles I had in my left hand for 3 days, that left as quickly as it came, be categorized as a relapse? I'd like to know because I want to believe this medication is keeping me relapse-free and if this is an actual relapse, then perhaps I need to report it.

As much as I want to think Fingolimod will protect me from ever having to deal with MS again, I'm not really living in that bubble. I know there is no cure, no magic bullet, and that I will have to suffer through more relapses and probably even move on to Secondary Progressive MS where there are no remissions. It would just be really nice to think that if that was a relapse, then WOW! it's not so bad. I've definitely seen worse.

I emailed my doc to get his opinion on whether or not that could have been a relapse. We'll see what his thoughts are.

Every time I have seen the definition of a relapse say "lasting anywhere from 24 hours to weeks or months" I would laugh. "24 hours! Yeah, right." It takes me over 24 hours to really work up a good new symptom. With my first attack, for the first 24 hours, my left foot went numb. Over a period of 2 weeks that progressed to include both feet, both legs and the lower half of my torso, with weakness progressing to the point of feeling like I was wading through mud. Now THAT'S a relapse. It usually takes me three months just to recover from one of those attacks.

So, for all you MSers out there, here's my question:

What has been your mildest relapse to date?

Did you see a doctor for it?

Any replies are greatly appreciated as I try to sort this all out.

I'll start a poll too, so we can see what the average duration of a relapse is for all you RRMSers.

Until next time, may you be symptom free or at least have only "good" days.

3 comments:

TickledPink said...

Well, I got an answer to that email. He forwarded my email to the study nurse (and cc'd me on it) and told her to have me come in for evaluation with her and then him.

He never exactly answered the question of how short a relapse can be, but I'm guessing that 3 days is possible if I have to go there to be poked and prodded.

babooshka said...

What an interesting blog. Very informative about MS(this will be passed on to a sufferer i know) and fun.

Very inspirartional.

TickledPink said...

Thanks for your comments! I visited your blog and was amazed by all the beautiful photographs! You are quite the artist.