Relapse signs?

[MandaPanda2888]

How do you know when your experiencing a relapse and not just new symptoms?

[Mynamegoeshere1]

Some relapses are very obvious, for instance, losing your sight in one eye due to an attack of optic neuritis. However, other relapses may not be as sudden or dramatic and you may just feel extra “wobbly” or tired. The way to really know if you are having a relapse is to have an MRI with gadolinium (contrast material that is injected during the MRI scan). Gadolinium is drawn to areas of inflammation and “lights up” when a lesion is “active.” In this case, demylenation is currently occurring, and you are having a true relapse, rather than feeling symptoms caused by older lesions.

In order to be a true relapse, the episode has to last at least 24 hours. There are such things as “mini-relapses,” meaning a quirky symptom which lasts for a couple of minutes up to several hours and then goes away, but these are not true relapses. True relapses usually last several weeks, although they can be as short as a couple of days or as long as several months.

A relapse must be separated from a previous relapse by at least a month. This is to distinguish it from symptoms that may be from a previously active lesion (which can change as inflammation subsides, remyelination occurs and/or scar tissue forms).

Good luck. I hope this information helps. I just copied and pasted it from an article on google. If you are ever in doubt, call your Neurologist and tell them your symptoms. They will tell you if you need to come in or what your course of action should be. Please keep us posted and let us know how you are doing.

[Redwings]

Hi Manda:
I'm going to add a couple of things from a different viewpoint.

First, a relapse (attack, exacerbation, flare) is defined as an onset of new symptoms or worsening of existing symptoms that are typical of an acute inflammatory demyelinating event in the central nervous system, lasting at least 24 hours, in the absence of fever or infection, separated from a previous relapse by at least 30 days.

According to that definition, your question of "relapse or new symptoms" is contradictory. An onset of new symptoms fits within the definition of a relapse.

Next, because a relapse is an inflammatory event lasting days to weeks, it's true that little increases in symptoms that last for a few minutes or hours are not true relapses. And for that reason there's [I]not[/I] such a thing as a "mini-relapse." An episode can't be a relapse and not a relapse at the same time. A pseudoexacerbation due to illness or heat is also not a "mini-relapse." To call something a relapse (even a mini one) when it isn't one is incorrect, confusing and misleading.

Julie Stachowiak, Ph.D., in her About.com pages about MS, is the one who said the there there are such things as "mini-relapses." Just because she has her own site on the Internet doesn't make it correct or helpful. Even though it sounds cute and fun to say, and a lot of people (mis)use the term, it's in your best interest to [I]never[/I] think of or call a short-term increase in symptoms a "mini-relapse."

Finally, it's always helpful when an MRI shows an enhancing lesion that corresponds to a relapse. It provides another objective confirmation of a relapse. But it doesn't always happen that way.

Sometimes an MRI with contrast done during a relapse (an event for which the signs and symptoms meet the definition of a relapse) [I]doesn't[/I] show any enhanced lesions. Or the area of enhancement doesn't correspond to the symptoms. (Or an MRI can show enhancement in the absence of symptoms or a relapse. Just more of the frustrating mysteries of MS.) There isn't always one-to-one correlation between an MRI and a relapse. This can all become problematic when a neurologist insists that there has to be.

Signs and symptoms alone can determine whether an event is a relapse. (That's how relapses were determined before the advent of MRI.) In other words, you don't need a weatherman to know which way the wind blows.

Ditto on calling your neuro if you think you might be having a relapse.

[MandaPanda2888]

I'm not currently concerned that I'm expert lending a relapse just wondering how I will know I assumed I will just know because I know my body pretty well. Many peoples stories of first signs and symptoms seem so dramatic but mine was really a loss of feeling in my right arm and numbness and tingling in my right hand in 3 fingers. And a LOT of tingling and tearing pains in my right shoulder. I've never had any trouble walking but lately my legs hurt badly from my knees down and I feel like I have to keep stretching them. This disease is so annoying.

[Mynamegoeshere1]

Are you on anything for spasticity? You might want to look that term up. It sounds like you might be experiencing that.

Spasticity refers to feelings of stiffness and a wide range of involuntary muscle spasms (sustained muscle contractions or sudden movements). It is one of the more common symptoms of MS. Spasticity may be as mild as the feeling of tightness of muscles or may be so severe as to produce painful, uncontrollable spasms of extremities, usually of the legs. Spasticity may also produce feelings of pain or tightness in and around joints, and can cause low back pain. Although spasticity can occur in any limb, it is much more common in the legs.

I am currently on baclofen for spasticity and it showed up early in my MS diagnosis. There are other drugs for it, but I believe the most widely tried first is baclofen. I would definitely call your Dr and discuss this. It can get pretty painful so I am very sympathetic if that is what it is. I not only have it in my legs, but my arms too. Let us know what happens. We are all like a big family here and get worried about you

[WillyNilly]

Manda- Knowing your body is great obviously! But from my experience I don't think you always WILL know, at least as far as the MRI.

Again, MY experience...I'm sure I said it here before, theres been times when I get referred back to my neuro because I feel SOOO BAD and we do an MRI...nothing new. Then theres times his office has called me because they haven't heard from me in awhile, set the appt. with a new MRI ordered first and I get in there and he's like, "Why haven't you called? Look at this and this...", yeah big enhancing lesions in new places, but I have no idea. I feel like I always do, tired, kinda flu-ish, vertigo...same old every day thing I've learned to live with.

Is it a "relapse" if we don't know it's happening? The ones that are important to me are the ones I FEEL. The ones I don't seem to get better from whether it shows on an MRI or not.

I believe I'm one of the fortunate few to have an exceptional PCP. I've been with her for a long time (1989) before MSish symptoms appeared and she has kept me through all the many nightmares of being called a freak (sort of) by many of the early specialists she sent me to. When something funky happens I call her first. She never assumes it's MS, or my other medical stuff.

Geez sorry- back to babbling again. I need to lay down for awhile and hope I haven't embarassed myself.

Simple answer, I don't think you can always tell if it's a relapse.

Originally Posted by Redwings

Hi Manda:
Signs and symptoms alone can determine whether an event is a relapse. (That's how relapses were determined before the advent of MRI.) In other words, you don't need a weatherman to know which way the wind blows.

Ditto on calling your neuro if you think you might be having a relapse.

I'm not so sure, especially for those of us with mild cases coupled with anxiety, who also don't have years of experience with MS. Consider the existence of a sub-clinical relapse? i.e.

Is that extra fatigue and extra spasticity I feel an exacerbation or not?

Or sometimes we can't remember or tell:

e.g. I don't remember my leg being this weak, but then I don't remember a lot of things.

Or this is definitely worse than last month, but better than right after my last exacerbation.

I suppose when I'm 100% certain I've had another relapse, I may be able to say that those small things I thought might be small relapses weren't. Until such time, some of us could still use a weatherman.

[MandaPanda2888]

Yes it's hard to say. The first time I ever noticed anything was my arm. Looking back I was extra fatigued I was achey but I had a baby in 2010 and contributed a lot of the sx to having a baby. I started to get concerned when they wouldn't go away and someone mentioned you shouldn't be that achey after your first baby!

I am only 24 and after losing 20lbs and still not feeling any better and having the tingles and numbness in my arm I felt it was time. No one would do anything about my arm.

The ER people thought I was insane. My doctor acted like it was no big deal and essentially gave up after I came back negative for arthritis and carpal tunnel. I have since then got a new pcp who I love and a wonderful neuro who was dedicated to finding a diagnoses as quickly as he could for my benefit.

[Redwings]

Originally Posted by BigA

I'm not so sure, especially for those of us with mild cases coupled with anxiety, who also don't have years of experience with MS. ... Until such time, some of us could still use a weatherman.

Signs and symptoms identifying a relapse doesn't mean that a patient is [I]on their own[/I] in determining whether or not they're having a relapse.

A neurologist, with a good history and clinical neurological exam, can determine whether an event is a relapse. Because of the quirks (or limitations, if you will) of MRI, it's an [I]MRI[/I] that isn't necessary to determine whether something is a relapse. After about my third episode of ON, my doctors stopped ordering MRIs. MRIs often don't show optic nerve lesions. And I had a significant, unmistakable episode of partial transverse myelitis for which an MRI wasn't ordered. It was quite obvious on its own.

The neuro is still required. If a person is dragging their leg when they never were before, and the MRI doesn't show any enhancing lesions, is a competent neuro really going to say that it [I]isn't[/I] a relapse? If a neurologist can't determine whether an event is a relapse, I think that says more about the neuro than it does about the MRI or the relapse.

Mild relapses might, indeed, fall outside of this category. Being subclinical, they may not stand out as different enough to make a person think they've had a worsening of old symptoms, so they don't call the neuro and don't get an MRI anyway. And if it does compel a person to consult their neuro, a subclinical event often isn't enough to cause a neuro to order an MRI. And if they do, there's still the possibility that nothing may enhance on MRI. Or, as I said earlier, the area of enhancement doesn't correspond to the signs or symptoms. So it may still come back to whether the neuro sees [I]signs[/I] of a relapse in addition to the person's symptoms. An MRI [I]can[/I] provide confirmation of a relapse, but if it doesn't, the neuro still has to make the call.

A neuro shouldn't need an MRI to determine whether an event is a relapse. A neuro shouldn't need a weatherman to know which way the wind blows. The 2010 McDonald criteria don't define a relapse by MRI results, only by reports or exam. The weatherman is the MRI, not the neuro. When certain or even in doubt about a relapse, call the neuro!

[ladibabe]

I kinda wanted to know the same thing. I have been having stabbing sensations in my left arch. New symptom for me. I have also started having le hermitts. I had this last year prior to dx. Which is a reoccurring sx. This tells me I am probably having a relapse. Its not bad so I'll keep it to myself.

[Redwings]

Originally Posted by ladibabe

This tells me I am probably having a relapse. Its not bad so I'll keep it to myself.

Keeping a possible relapse to yourself deprives you of having your neurologist assess the severity of your MS and the appropriateness of your treatment, which can affect the quality of your life in the future. How you handle your disease is, of course, ultimately up to you. (I've decided not to pursue any more cancer screenings, for example.) But I did want to point that out, and give you the advantage of reconsidering, just in case. Quality of life and all.

[New normal]

Thank all of you for such an interesting thread.

I appreciate you all taking the time to respond. I now believe I will call my neuro and tell him the new events. Tremors have increased in spite of medication. My legs are weakening , things ache when walking short distances, and I get a "bounce" to my walk as the legs tend to "give way."

I recently posted a light hearted explanation....only to disguise my real apprehension as to the new developments.

This forum has reminded me that I cannot ignore significant changes...thanks to all of ou for bringing me back to the table...

Just didn't want to face the reality of this rapid deterioration, and more so, did not want to face explaining this to a doctor who is skeptical.

I am so impressed with the contributions so many of you make.....no doubt all said before to other frightened people...thank you so much....

Will call tomorrow the doctor tomorrow........

[Mynamegoeshere1]

Please keep us posted and let us know how you are doing. Good luck

[ladibabe]

Everytime I tell my husband about a tremor or issue he says he gets the same thing sometimes. I know his tactic is to make me feel better but it also makes me question if the symptom is MS related or a figment of my imagination. I told my doctor about the stabs in my arch and my increased tremors and he asked if it affected my quality of life. I said no because it really isn't. It's not to the point were I would medicate for it so.. I guess I will just grin and bare it.

Originally Posted by Redwings

Signs and symptoms identifying a relapse doesn't mean that a patient is on their own in determining whether or not they're having a relapse.

A neurologist, with a good history and clinical neurological exam, can determine whether an event is a relapse. Because of the quirks (or limitations, if you will) of MRI, it's an MRI that isn't necessary to determine whether something is a relapse. After about my third episode of ON, my doctors stopped ordering MRIs. MRIs often don't show optic nerve lesions. And I had a significant, unmistakable episode of partial transverse myelitis for which an MRI wasn't ordered. It was quite obvious on its own.

The neuro is still required. If a person is dragging their leg when they never were before, and the MRI doesn't show any enhancing lesions, is a competent neuro really going to say that it isn't a relapse? If a neurologist can't determine whether an event is a relapse, I think that says more about the neuro than it does about the MRI or the relapse.

Mild relapses might, indeed, fall outside of this category. Being subclinical, they may not stand out as different enough to make a person think they've had a worsening of old symptoms, so they don't call the neuro and don't get an MRI anyway. And if it does compel a person to consult their neuro, a subclinical event often isn't enough to cause a neuro to order an MRI. And if they do, there's still the possibility that nothing may enhance on MRI. Or, as I said earlier, the area of enhancement doesn't correspond to the signs or symptoms. So it may still come back to whether the neuro sees signs of a relapse in addition to the person's symptoms. An MRI can provide confirmation of a relapse, but if it doesn't, the neuro still has to make the call.

A neuro shouldn't need an MRI to determine whether an event is a relapse. A neuro shouldn't need a weatherman to know which way the wind blows. The 2010 McDonald criteria don't define a relapse by MRI results, only by reports or exam. The weatherman is the MRI, not the neuro. When certain or even in doubt about a relapse, call the neuro!

i've gone three times during periods of what might be a sub-clinical relapse - month-long periods of increased fatigue and spasticity. The neuro did an exam once (the others were just discussions with the Nurse Practitioner), asking me to stand and then close my eyes. When i didn't fall, she announced I had not had a relapse.

I'm happy if it wasn't. I prefer to assume I'm having a bad period with sleep/emotions and normal fatigue. But I will never know if it was a small relapse that resolved.

And indeed, if disease activity is still occuring between events, then there can be larger and smaller amounts of disease activity.

I do think it is important to tell my Neuro every time I have one of these events. When they look a them in the future, they may suggest a pattern or slow progression.