Re: Flares, exacerbations, or as we like to say, flairs!

[Guest guest]

The term "flare" is used by both patients and doctors to describean exacerbation of whatever it is that the individual person wMShas. For example, for years, I had exacerbations or flares of opticneuritis, early on. Those went away, and then I had episodes of severevertigo. Each of these--if lasting for more than a few hours was treatedat the time with some form of cortico-steroid, and recently oral Prednisonehas worked just fine. To stave off these charming events, there are various forms of interferondrugs used; I was on Avonex for many years and feel that it gave memuch fewer flares and less severe disease in the long run.Currently, there are whole new classes of Rx drugs being used, and Iam not as familiar with them, but

others here can tell you more about them.Many with genuine (visible on an MRI exam of the brain) MS demyelinatinglesions, yet have few flares, exacerbations or episodes of symptoms, andsome never do have much in the way of numbness, whereas others do.I think that I had had MS for more than thirty years before I had anynumbness at all. I was diagnosed (accurately) wMS at the age of 19, and am now 73, and having severe numbness in my feet--hadthat for a while--and now my lower legs, though that may be due tosome other medical conditions that I have.Just having one diagnosed medical condition does not, alas, inoculateone against having or inheriting another!Let us hope that your diagnosis, no matter what it might be,can be made soon!Love to you, and to all here with us,n, from way out near San Francisco, in CaliforniaTo: MSersLife Sent: Mon, August 30, 2010 2:59:08 AMSubject: Re: New to group - running out of hope [symptoms - sorry its so long!]

Thanks for sharing that, Reb; it's so reassuring to have found people who (unfortunately) have some "real life" knowledge with these kinds of symptoms.

I'm sorry to hear that your wife has gone through so much; I hope she's doing alright.

You used the word "flare" - which others have also; I assume that means a "flare-up"? Does that refer to symptoms that just become really intolerable or start suddenly?

Thanks,

Debbie

"I was told by one neurologist years ago that it "couldn't be MS"

> because myextremities weren't going completely numb. Is that true?"

>

>

> That's a very strange thing to say! Numbness is not an on-or-off thing. If

> you're numb, you're numb even if your extremities aren't going "completely numb"

> (whatever that is...). I don't have MS, but my wife has. In the flare that

> brought her to the dx she was numb from the waist down, more so further down,

> with the feet being the most numb. But I don't think she was completely numb in

> even her feet (if that is unable to sense anything whatsoever), she did say it

> felt like she was wearing something thick and rubbery. And even if her feet

> would/could have been called completely numb in that flare, she has had episodes

> of being somewhat numb or partially numb too.

>

> The bottom line is, if you are numb at all, without an obvious explanation (like

> "my foot went numb because I was sitting on it" or "I was outside in freezing

> weather, and soon my face was numb and had a rubber feeling to it"), then there

> is something going on with the nerves, one way or the other. Doesn't necessarily

> mean it's MS, but something is off. It's like the ER-orthopedist (who was the

> one admitting to hospital in that flare that brought her the dx) said: "The

> only real question is if I should admit you to the orthopedic clinic, on a

> suspicion of a possible dislocated disk, or if I should refer you to the

> neurologists for further investigation along that route. What is absolutely

> clear is that legs shouldn't just go numb like that, and if they do, we need to

> look into it and fix it somehow"

>

> I am, Reb, by the way. Living in the south of Sweden, with my wife , who is

> the one with MS in the family. Welcome to the list! And Best of luck on your

> journey!

>

> love

> /Reb

>

[Guest guest]

flair - your body is fighting you and there is no detente - until it decides to play nice

To: MSersLife Sent: Mon, August 30, 2010 6:40:07 AMSubject: Re: Flares, exacerbations, or as we like to say, "flairs!"

The term "flare" is used by both patients and doctors to describean exacerbation of whatever it is that the individual person wMShas. For example, for years, I had exacerbations or flares of opticneuritis, early on. Those went away, and then I had episodes of severevertigo. Each of these--if lasting for more than a few hours was treatedat the time with some form of cortico-steroid, and recently oral Prednisonehas worked just fine. To stave off these charming events, there are various forms of interferondrugs used; I was on Avonex for many years and feel that it gave memuch fewer flares and less severe disease in the long run.Currently, there are whole new classes of Rx drugs being used, and Iam not as familiar with them, but others here can tell you more about them.Many with genuine (visible on an MRI exam of the brain) MS demyelinatinglesions, yet have few flares,

exacerbations or episodes of symptoms, andsome never do have much in the way of numbness, whereas others do.I think that I had had MS for more than thirty years before I had anynumbness at all. I was diagnosed (accurately) wMS at the age of 19, and am now 73, and having severe numbness in my feet--hadthat for a while--and now my lower legs, though that may be due tosome other medical conditions that I have.Just having one diagnosed medical condition does not, alas, inoculateone against having or inheriting another!Let us hope that your diagnosis, no matter what it might be,can be made soon!Love to you, and to all here with us,n, from way out near San Francisco, in California

To: MSersLife Sent: Mon, August 30, 2010 2:59:08 AMSubject: Re: New to group - running out of hope [symptoms - sorry its so long!]

Thanks for sharing that, Reb; it's so reassuring to have found people who (unfortunately) have some "real life" knowledge with these kinds of symptoms. I'm sorry to hear that your wife has gone through so much; I hope she's doing alright. You used the word "flare" - which others have also; I assume that means a "flare-up"? Does that refer to symptoms that just become really intolerable or start suddenly? Thanks,Debbie "I was told by one neurologist years ago that it "couldn't be MS" > because myextremities weren't going completely numb. Is that true?"> > > That's a very strange thing to say! Numbness is not an on-or-off thing. If > you're numb, you're numb even if

your extremities aren't going "completely numb" > (whatever that is...). I don't have MS, but my wife has. In the flare that > brought her to the dx she was numb from the waist down, more so further down, > with the feet being the most numb. But I don't think she was completely numb in > even her feet (if that is unable to sense anything whatsoever), she did say it > felt like she was wearing something thick and rubbery. And even if her feet > would/could have been called completely numb in that flare, she has had episodes > of being somewhat numb or partially numb too. > > The bottom line is, if you are numb at all, without an obvious explanation (like > "my foot went numb because I was sitting on it" or "I was outside in freezing > weather, and soon my face was numb and had a rubber feeling to it"), then there > is something going on with the nerves, one way or

the other. Doesn't necessarily > mean it's MS, but something is off. It's like the ER-orthopedist (who was the > one admitting to hospital in that flare that brought her the dx) said: "The > only real question is if I should admit you to the orthopedic clinic, on a > suspicion of a possible dislocated disk, or if I should refer you to the > neurologists for further investigation along that route. What is absolutely > clear is that legs shouldn't just go numb like that, and if they do, we need to > look into it and fix it somehow"> > I am, Reb, by the way. Living in the south of Sweden, with my wife , who is > the one with MS in the family. Welcome to the list! And Best of luck on your > journey!> > love> /Reb>