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Flare/Exacerbation/Symptoms...What's the difference other than semantics?

I am not sure how long I have actually had MS, but I was just diagnosed about a week and a half ago. I seem to always have a bout a zillion questions. Here is my next one:

Are a  Flares and Exacerbation the same thing? If you have symptoms lasting more than 24 hours is that a flare or an exacerbation? Is it only new symptoms, worsening symptoms, or re-occurring symptoms?

For example I am just finishing up a little bought of leg weakness, spasms and contractions. Was that a flare-up? I am finishing up my last does of IVSM today. I have had some improvement. I didn't have the great burst of energy that I was hoping for, but the weakness has improved and my balance is a lot better. I don't feel completely like my normal self yet, but I am hopeful that I will soon.




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Avatar universal
You are absolutely right about having humor in all of this. Its a good thing you come here for support and information because this place has been a God Send to me.

I hope your leg weakness does not stay for you. And good luck with your choice of which DMD you will take.

I totally get you when you say you need to get over the "hump" and to learn how to live your "new" normal... I have to practice that as well.  Its very hard and not many people understand how difficult it is unless they have gone through it themselves.


Good luck and lots of hugs,
Pam

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Avatar universal
I think most of us on here get enough bad news, so we need all the humor that we can get!

I think from what I have gleaned from all of the comments is that I am probably in some sort of flare. It will most likely go away, but some people have issues that stay permanent. Hopefully these won't be.

My leg weakness and balance has improved with the steroid infusions. My joints seem swollen, but I suspect that is from the steroids. I didn't get the boost in energy that I was hoping for. I'm still pretty tired.

I'm not on a DMD yet. They sent me home with a bunch of information and I guess I am supposed to choose one. Hmm....what injection is more fun than the others? I feel a little lost. I feel like I need an MS orientation. Brochures and Google just aren't cutting it.

I'm sure it will all work out and be okay. I just need to get over this initial hump and learn how to live with my "new" normal. Patience has never been a strength of mine.
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Avatar universal
LOL, OMG I am soooooo sorry. I totally didn't mean to do this to you.... :) You just brought up a really great question and I kinda went with it... I hope with everyone elses input helped you out in between all of my questions..

I like your statement .. LOL you have a great sense of humor!!
take care,
Pam
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Avatar universal
Um...what was my question again? :)
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572651 tn?1530999357
I developed what I thought was a tremor in my left hand when I was reaching for something or pointing with that hand.  My doctor saw it at my checkup in the summer and decided it was a familial trremor, a benign problem.  I was also battling that killer UTI at the time.  Once I went into rigors and was  hospitalized and had the mega doses of antibiotics the tremor in that hand disappeared and I haven't experienced it since then. The two appeared to be resolved at the same time- go figure,

@Pam - I hope your tremor leaves soon, too

@Q- thanks as always for your expertise.  
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Avatar universal
Hi there, great to see you back! I believe that my tremors are exactly how you described them. I can either be reaching for something and the tremor gets worse, or just holding my hand up in the same position, holding a pen,  and lifting my fingers the tremor is there.

after two months of having this, I think I have been going through a flare. I jumped in and took over this post by accident but was curious myself if I was actually going through this flare still because the tremor is not as prominent, but it is lingering on...

Thanks Pam

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147426 tn?1317265632
Hi, all, I need to step in here.

First of all - Tremors.  Bob is right that these may or not be signs of MS.  If the patient complains of them then they ARE symptoms.  We should not be in the business of diagnosing them - the written word is too subjective.  Tremors are extremely common in MS, but do NOT diagnose MS, they are too common in other conditions, and they may be hereditary and benign.  Also in MS we can see fine tremors of just the hands when we are really trying to do something delicate or we can see wide, swinging tremors so bad that the hands miss the mouth with a sandwich or the legs cannot maintain a gait.  Even the head and trunk can swing widely, a tremor called "rubror".  

It is pretty rare to see a "resting tremor" in MS.  This is one in which the tremor occurs with no muscle action or tension at all.  MS almost always has an "action tremor".  This occurs with effort.  Movement is not required in an action tremor.  It could be see also in the mere effort of holding a limb up and trying to keep it quiet.

Tremors can be confused with trembliness or shakiness and both can be metabolic, muscle fatigue tremors, hyper-thyroid, etc

The doctor should listen to and believe reports of the patient that there is some sort of ongoing rhythmic movement.  If we have what seems like a tremor, but it isn't always there, we should try to catch a video of it (like with a cell phone) to show the doc.  I believe we take a video of any symptom that is visible and not always there.  Then the doc can see it and make his/her own determination.  (examples incude jerking, nystagmus, gait pprblems,  moving abmormalities, drooping face, obvious spasms and such.)

A Discussion of Relapses

The definition of a flare.  Flares are do to the immunological inflammation that occurs in RRMS.  First the definiton of flares (attacks, relapses, etc) is not defined by the McDonald Criteria.  It is a basic definition of the disease which the MC merely repeats.

First, there is one or more new symptoms that occurs over a period of hours, days or sometime weeks.  Minimum length of duration should be 24 hours, but most doctors are more comfortable when it lasts 48 hours or more.  Often there are still left-over symptoms and problems from before.  We don't see many of the lucky people here that completely clear up between relapses.

All of the symptoms of a new relapse do not always show up at the same time, so new ones a week or so later are lumped in with the relapse that show up with the first new symptom.

All the symptoms of a relapse do not have to go away or improve before the next relapse hits, infortunately.  The requirement is that the symptoms be "stable" for 30 days before one can talk about a new relapse.  You may still be totally miserable, but after 30 days of about the same level of symptoms, you can have a new relapse.

The experts do not allow for there to be overlapping relapses.  Remember these are doctors who have studied MS for decades and tried extremely hard to formulate these guidelines for neurologists.  

30 days is not a magical number.  A neuro might accept 28 days or some such depending on the circumstances.

The time between relapses is called a Remission.  Unfortunately, you can feel like crappola during a remission.  It's just a time when no new symptoms have appeared, and the current ones are not obviously worsening.

Yes, some of us get progressively worse as each relapse hits.  Those people need to be evaluated by their neuro for a re-evaluation of their status - for instance could they be moving into a Secondary Progressive Phase.

You almost never see Progressive Relapsing mentioned in the literature - and a ton of people think that this is where they fit.  When you do hear more thorough explanations,  they mention a steadily downward course, marked with only a few relapses early in the course.  

Now, one of the confusing things is the day-to-day variation in our symptoms.  This swing of symptom ferocity can be huge and we have to realize that when we have a good day and then a bad day, that isn't necessarily a worsening of the symptom for the purposes of determining a new relapse.  We have to get a feel for the range of good to bad that we go through, especially in response to fatigue, overheating, and stress.  When the we consider whether a symptoms is "stable" we have to consider that normal up-and-down.  If that up-and-down is about the same, then we can say that the symptom is stable even if we feel like holy sh!t.

I hope this helps.

Quix
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Avatar universal
I don't get the silly "must be seperated by 30 days" nonsense. I WISH I had 30 days with nothing! Not the case.  And what about people with PPMS? They're not going to get a 30 day break!

ANd does that 30 days mean 'clear of symptoms" or "30 days from the start of one attack to the next"? Or does it mean "30 days since your left foot when numb, but since then your right leg started twitching which is an entirely different thing"?

And what about what MS Australia told me, that "it can take 6 months to recover from a flare"?? Does that mean you ahve a flare which lasts, say a week, but you feel cra ppola for 6 months afterwards, but if you have another flare within that 6 months, you will feel further cra*pola for another 6 months following that second flare, etcetc with no end in site, as the flares continue?? I seem to fall into that last category.

Mr McDonald and his criteria shoud have a rethink, I think.
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1558440 tn?1299699617
My apologies for going back to Pam's question on tremors, but I couldn't help it. I have tremor problems as well - mostly on the right side. Sometimes when I'm standing, my right leg shakes, so I have to move all my weight to my left. I also get them in my right hand and sometimes my whole body shakes.

When I visited the neuro, my body put on an unexpected show of tremors and he blew me off because my brain MRI was normal.  He said I am probably "depressed" or have problems with "anxiety."  (both of which I know are not true)

Should I pursue more answers on the tremors issue? I'm at the end of my rope with doctors these days. (PCP thinks I have ms, but two neuros won't even consider due to clean brain MRI) I'm just not sure if some things are worth the frustration, not to mention, the difficulty of fitting in doctor appts. with my work schedule.

Thanks for your help.   Ojibajo, I hope you are feeling better!
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1221035 tn?1301000508
yea...I have thought the same thing about it being PPMS. I just now started Tysabri, so I am praying that it will help. I did talk to my neuro, and I think you are right about dx RRMS so DMD can be used.....and Ty has even shown improvements in brain lesions, so my fingers are crossed.

Relapse, Attack, Flare and Exacerbation are all the same:

This is from: http://ms.about.com/od/multiplesclerosis101/p/ms_relapses.htm

A relapse is a clinically significant event (meaning that it has outward signs and/or symptoms) caused by an MS lesion on your brain or spinal cord. It is either a worsening of symptoms that you already have, or the appearance of new symptoms. Relapses are also referred to as "exacerbations," "attacks" or "flares."

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).

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1453990 tn?1329231426
I'm not sure relapses/flares/exacerbations  need to be separated by more than 30 days.  They do if you are counting them as attacks.  That restriction is in the McDonald Criteria.    

Not feeling any remission for a year and just new symptoms is something you really need to follow and discuss with your doctor.  If you just have additive exacerbations, the question becomes "If this really RRMS or is it SPMS?"  The other question is: "Was this ever RRMS or was it PPMS?"  

I've heard that some neurologists diagnose RRMS so that DMDs can be prescribed and watch the disease for one to two years and then consider revising the original RRMS diagnosis to PPMS.  

Bob
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1221035 tn?1301000508
I believe that by definition of exacerbation/flare/relapse (a new or returning symptom lasting more than 24 hours and separated by 30 days) we all have more of these then we report. I know I do. I think that is why this question comes up so often.

I will have increased numbness, tingling, aching or vibration sensations that last more than 24 hours that I just deal with.

I have been dx for a little over a year now, and have never felt a remission....I am in almost constant pain, discomfort, cognitive issues,vision issues, urine issues.....so this has been very hard for me to answer also.
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198419 tn?1360242356
Pam - Concerned you should be. It's an important symptom to be discussed with the doc.

Oji - Hope you can get back to us ref. the relapses.  It's an important discussion - one we should discuss often.

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Avatar universal
yep,,, that's it!!  Thanks Bob, your the best!!
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1453990 tn?1329231426
Cerebellar tremor (also known as intention tremor) is a slow, broad tremor of the extremities that occurs at the end of a purposeful movement, such as trying to press a button or touching a finger to the tip of one’s nose.

Bob
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Avatar universal
Thank you both for your input.. I am not sure the "name or type" of the tremor, but it definately gets worse when pointing, and I have had to do the nose to finger test to the neuro in Rochester. My family doc. was the one that first saw it and she said, we need to schedule an MRI, you seem to be progressing.

That was a month ago. MRI was clear. I also had to show my ENT and Eye surgeon before my surgery, and they both asked if I had been to a neuro and was checked for MS.

I I am just concerned about this tremor, because it seems to want to go away, but then Its still there just not as bad.

Is this tremor considered an action tremor or (intention)?
I just hope it goes away, its hard enough to put make up on with one eye, but throw in a shaky hand,, fugetaboutit!!! LOL (alittle Italian humor)

Ojibajo,  I am sorry I didn't mean to take over your post, like I said, this is a great question.

Pam
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1453990 tn?1329231426
Tremor as a symptom (subjective) causes problems for doctors, if they can not reproduce it during the clinical exam and evaluate it as a  sign (a measurable objective manifestation.)  Many sources will state "termor is a symptom of..." but symptoms are what a patient tells a health care provider and are listed in the subjective note.  Signs are what the provider sees and listed in the objective note. I guess there are times when the provider does not observe the tremor, and the patient only describes the tremor.  The issue here is that to determine the "type or cause" of tremor, the provider normally needs to observe the the tremor.

It is a technical distinction.  In all patients, all tremor needs to be investigated. There are other causes, but most tremors (including things like "chattering teeth" and "shivering"  when you are cold) are due to involuntary neurologic causes.  Even in cases of electrolyte imbalance, hypoglycemic or delirium tremens, the underlying source of the tremors is neurologic.  The rhythmic oscillating muscular contraction and relaxation of the muscle that is the hallmark of tremors is almost always neurologically based.  I really can not think of a cause for true tremors that is not neurological.  Maybe Quix or someone else can.  

This is what differentiates tremors from a twitch, myoclonus, myoclonic jerk or fasciculations.   Keep in mind, that I was trained as a Military Medic  and biomedical engineer, so my interpretation is based on the way I was trained.  If a patient came in complaining of tremors that I could not see, I'd list as a subjective symptom, and test for action tremor, intention tremor and watch for tremors during the neurologic exam.  If the tests could not reproduce tremor, I'm not sure I'd put much faith in the subjective complaint.   Depends on the history and the rest of the exam.

This one of the reason I can see why doctors "ignore symptoms."  A symptom is a patient complaint.  If it can not be reproduced during the clinical exam as a sign, what can the doctor do with that complaint?  

Bob
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198419 tn?1360242356


Pam - will be important for the doc to get to the bottom of the underlying cause of the tremor - sure hope it's not permanent, but you never know :(.

Bob - no disrespect, but I do disagree. Her tremor can be a symptom of something neurological, or mechanical, or something not yet dx'd.

-Shell

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1453990 tn?1329231426
The tremor might be more of a permanent sign.  It isn't a "symptom," since it is something that is clinically observable.  It is something that your doctor should be aware of.  There are several types of tremor.  There are intention tremors, action tremors, etc.  The different types of tremors can indicate which area of the brain they are coming from.   This can be important, because even though a lesion may not be visible on MRI, the tremor may point to damage in an area brain.  Clinical exams can be more sensitive than MRI in picking up disease progression.

Bob
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198419 tn?1360242356
  This is always such a good topic to bring up.

What's flare/relapse to one may not be for another. Understanding your baseline is super important when it comes to knowing officially your in one or not.

For me, I use my 1st large attack as a comparison. If it weren't for that episode - I'd probably think each issue I have for 3-5 months at a clip were indeed relapses. Luckily I have that as a gage and know they are not.

It's just that I get a worsening symptom that does last for a long while and then fades off to tolerable and then oftentimes gets replaced w/another, or an old one. By definition, this would go against the standard rule of relapse. But for me, it's chronic old damage wreaking havoc.

Each individual being different (i.e., symptoms not being equal to lesion location, etc) and knowing your detailed history (especally the doc) and knowing your own body all factors into this determination.

This is an excellent HP on relapses and pseudo's: http://www.medhelp.org/health_pages/Multiple-Sclerosis/Relapses--Pseudo-Relapses-and-Remissions/show/372?cid=36

-Shell
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Avatar universal
Thanks Bob,

What about the tremor in my left hand for over two months, its still there but not as bad, is this flare still going on or is this now going to be a permanent symptom??

Pam

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1453990 tn?1329231426
This is where the neurologist comes in.  Spasticity for a day that goes away, I'd call a symptom.  I have spasticity all the time, but I can't really point to when it started, so I call it a symptom.  Some days it is worse than others, but I don't see it as a flare.  I do tell the neurologist and as long as he doesn't seem to excited, I just call it a symptom.  He does treat it though.  Baclofen  as I need it.  

I have right sided strength issues that I didn't notice.  The neuro nurse did.  It is a new sign.  I found out when I went in because I thought my Optic Neuritis was back.  It was.  I my case Optic Neuritis is a symptom of my MS.  I had the "return or increase in a symptom."  

Spasticity and hyperreflexia are "clinical signs" - something the doctor and see, feel, etc., not really "symptoms."   They could be left over from an attack.  I guess with my right sided weakness, if I couldn't use my right arm or leg, that would be an attack.

Bob
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Avatar universal
Hi, I am not dx'd with ms, still in limbo, but I have had the exact question lingering in my head as well.

I am wondering the same thing regarding my left hand tremor. Before Christmas it started. My left hand had a very pronounced movement, not just the shakes, but a very large based shaking tremor type of movement. ( hard to explain in words) but anyway, it was going on for about 2 months with it like that.

I am still having the tremor, but it isn't as bad as it was for the first two months. Was this a flare and now I am having a lasting effect? Or, am I still in a flare, but it is lessening up??

Hi Bob,
I have had spasticiy for one day, and then it went and then came back a week later, are these symptoms or an attack??
I have hyperreflexia,, this is a leftover from an attack??


Ojibajo,, this is a great question
Pam
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Avatar universal
Thanks Bob,

I understand not wanting to acknowledge it. I just want to feel completely normal. I am hoping denial might help. :)
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