Relaspe Question

[karenwb2]

I know that this may sound crazy but at times I wonder this and thought it was just better to ask. When I was dx. I only had small issues such as tingling down on arm, leg feeling funny, and some numbness when sitting to long.

So I started Copaxone in May. I have often wondered if I was in a relapse and I have never been sure. But what I have notice from reading different post is that most people have a relapse there is no doubt about it.

It seems to be different than the old problems and it is something that is completely new. So any help would be appreciated.

thanks
Karenwb2

[MSer102]

A relapse is the onset of new or the worsening of existing symptoms lasting at least 24 hours (some neurologists say 48 hours).

So it can be a completely new symptom but it doesn't have to be completely new. It can be an existing symptom that is noticeably worse.

What makes it confusing sometimes is that a relapse can be mild. It doesn't have to be something that knocks you on your butt. But a relapse is noticeably different than the ups and downs of everyday symptoms.

I've always known when I had a relapse. I've never heard of anybody not knowing when they had a relapse. I've heard of people who knew something was different or wrong and ignored it or denied that it was a relapse. But I've never heard of somebody not knowing.

It's possible to not be able to tell the difference between a real relapse and a pseudoexacerbation, but that's a different story. It's also possible to have an active lesion that isn't causing symptoms. But that isn't the definition of a relapse. 'Nother story altogether there too.

If a symptom is new or much worse than usual, you'll know that it's new or worse, which means that you'll know that you are having a relapse. Your neurologist might have to determine if it's real or pseudo, but you'll know.

[Sunapee]

I'll also be interested in any responses to your question. I was diagnosed 2 1/2 years ago and it seems that the more I learn about MS the less I actually know, among other thigs is the question, ' Is this a relapse?'
I have been experiencing new symptoms, ( throbbing feet) and my original symptoms, ( pain down the arm), have returned. All I can add is that this MS is very perplexing.
Sorry I'm not much help.

[KatieAgain]

Not all flares are created equal. For example, I get burning in my tongue and left hand that can last for several weeks. Is it technically a flare? Yes, it lasts for more than 24 hours and it eventually remits. Do I go to the doctor? No. I take my Neurontin to relieve the symptoms...it is something that does not need steroid treatment. A lot of MSers have these type of symptoms and ignore them once verified by a Neuro that it is MS.

I would venture to say a lot of us have flares going on very frequently. But what isn't so frequent is what I call a "Major Flare". A Major Flare has to be treated, it is disabling to the point that you can not work and have problems carrying on with daily activities. Your first major flare is usually a very scary experience.

For example, I woke up one morning to get ready for my daily run and I did not make it two steps out of bed before I fell. My foot was completely numb. Figured I had pinched a nerve or something and it was the weekend so I blew it off. Well, by the end of the weekend the numbness had traveled up my entire leg, then up to my arm....within a week, I was not walking at all. I stayed in that flare close to 5 months before I came out of it and was in need of serious PT. I never regained my ability to run...damage was done.

Most major flares physically wipe you out and are emotional roller coasters. I have had three major flares since Dx, and I slept no less than 18 hours a day.

One the other hand I have had numerous not so serious flares that do not interfere so much with my daily life...but they can be painful or irritating.

Most of the "I'm in a flare" posts here are major flares. People are in need of relief and sometimes it does not come quickly.

[karenwb2]

thanks

Hello, thanks so much for your answers to my questions. That does make me feel better, so I now know that when the big one comes I will be sure that is what it is. I have been having some of the small ones.

Once again thanks,

Karenwb2

[MSwhileOverseas]

Karen I have often wondered the same thing. I was diagnosed after a pretty serious attack that left me unable to see, could barely walk, and didn't have the strength to hold a glass of water. That was almost 8 month ago and while I still have lingering symptoms thankfully I have improved a lot.

3 months after the initial attack I had improved but still had double vision, was still weak, I still had a lot of improvement. Anyway I had a UTI while visiting my parents so my mom took me to a local doctor. When I told her I had MS, before asking how I was or knowing anything except I had MS, she said "well you MUST be in remission" that statement ticked me off so bad. What was her definition of remission, simply the fact that I could walk in. Since then I have often wondered what remission really means with MS since we always have MS. I definitely know what a flare is but I struggle with the remission part, when someone hears you are in remission then they think you are perfectly healthy and that's just not the case.

[bree2013]

Pseudo or not?

Karen - I have wondered the same thing.

And what is a pseudo flare? Is that something only a neuro can determine? Does getting an MRI while experiencing the flare determine if it's pseudo or not? (i.e. no active lesions showing on MRI)

Any insight from those knowledgeable would be great.

Thanks,
Bree

[KatieAgain]

A pseudo-flare is one that brings on MS Symptoms until whatever is causing the symptoms is discontinued. It is not a true flare and is temporary.

For example, if I go to the Mall, I take my walking stick for support. If I am standing and walking for about 40 minutes my leg starts dragging. If I continue walking I will start severely limping and can easily trip. If I sit down for 15 minutes...it all goes away and I can start over.

Another example, many people are heat intolerant. If they take a hot bath, get in a Jacuzzi, or are outside in the Sun, they could start experiencing their symptoms to acting up. Once the heat is taken away and the body cools off the symptoms disappear.

[bree2013]

Thanks Katie, that does clarify a bit.

I had been wondering if I was in a flare or pseudo and should call neuro. But the symptoms have subsided and they weren't anything that was debilitating so I'm going to chaulk it up as pseudo. Lack of sleep, traveling, etc could have very well been culprit.

Thank you for your analogy.

Bree

[Mable]

A different perspective

I have had two attacks that I know of. One was 10 years ago when I lost the sense of temperature in my leg. It lasted one week. Then I experienced the big attack--double vision and some face paralysis--that got me diagnosed 2 years ago. I take a different perspective on relapses than some of my co-MSers here.

If you are on a DMT and you have a relapse, I would take it seriously, no matter how minor. The neurologists I read and have spoken to believe that breakthrough disease (that is, disease that comes along when you're already on meds) signals the need for a stronger drug.

MSers with longer disease history didn't have the options for stronger drugs, so they accepted occasional relapses or skipped from one moderately effective injectable to another. But now we have a lot more choices, and in a few months we're going to have what I think of as the nuclear option: Alemtuzumab. I think they can stop disease activity in most people if you're up for taking risks.

So far, I haven't had a relapse on my Copaxone. And no new lesions on my MRI. My hope is that breakthrough disease appears as new lesions before it shows up as an attack that disables me, and I can get on a stronger drug if needed.

One more thing. My insurance company pays a lot for my neurologist. As such, I am not the least bit reluctant to give him a call when I have questions. IMO, new dx's can call their neuro offices as often as they want. If he doesn't like it, he should have specialized in something less terrifying.

[Thinkimjob]

I'll be taking the nuclear option, as soon as it is available. Better than death by a thousand cuts.