Wondering how we compare as to frequency

From onset I had episodes almost monthly (not very usual), now they've spread apart to be over 2 months (copaxone might be the reason for this). I've not been on it that long so I'm hoping of course they become less frequent.

Feel free to share, if you'd like how often yours have been.

I'm asking simply for all of us to see if we are very much alike in frequency or how vast the difference from one to another is.

thanks

kiera

p.s. The Institute I attended said that they believed these were not seperate attacks but that I'm in one large relapse with good days?...

This terminology doesn't work best for me , as on those attacks I do not leave home (usually), find trouble washing hair, fatigue takes over and my level of function is almost zip. Verses what I call my remissions (no matter how short and even if they do not fit criteria for remission) as then i have hardly no symptoms, can play basketball, shop, and just hop along like I'm a brand new person again.

So, with all that said, it's easier for me to refer to mine as I've mentioned above. It's the distinct difference of being functional or not.

Kiera said...
From onset I had episodes almost monthly (not very usual), now they've spread apart to be over 2 months (copaxone might be the reason for this). I've not been on it that long so I'm hoping of course they become less frequent.

Feel free to share, if you'd like how often yours have been.

I'm asking simply for all of us to see if we are very much alike in frequency or how vast the difference from one to another is.

thanks

kiera

p.s. The Institute I attended said that they believed these were not seperate attacks but that I'm in one large relapse with good days?...

This terminology doesn't work best for me , as on those attacks I do not leave home (usually), find trouble washing hair, fatigue takes over and my level of function is almost zip. Verses what I call my remissions (no matter how short and even if they do not fit criteria for remission) as then i have hardly no symptoms, can play basketball, shop, and just hop along like I'm a brand new person again.

So, with all that said, it's easier for me to refer to mine as I've mentioned above. It's the distinct difference of being functional or not.

The description the Institute gave you is more accurate than your interpretation. A new attack is when you have NEW symptoms, or tremendously worsened OLD symptoms, and the worsening and/or new symptoms last for 24 hours or more.

It's pretty usual early in a diagnosis for symptoms to come and go over hours, or overnight, and you experience several good days in a row...followed by days when you feel punky.  Often what happens is on the days you feel GOOD, you overdo, work hard, play hard, do a lot of stuff..which is very wearing on a nervous system that is malfunctioning to begin with. So the next few days you find yourself way overtired, feeling unable to do much, feeling like punk.  It's a matter of finding a balance so that when you DO have "good days" you get stuff done, but not "overdone", so you don't keep cycling in and out of being way overfatigued.

When I was first diagnosed, and for the first 12 years or so, I experienced on average 2-3 significant exacerbations a year.  On a day to day basis, I had symptoms, and some days were much better than others.  But when I had a true exacerbation -- things would happen that signifcantly impaired my ability to walk/toilet myself/ bathe myself/ feed myself -- those things that doctors call ADL, or "Activities of Daily Living".  Occasionally (remember this was LONG ago before steroids and other treatments were done on an outpatient basis!) the exacerbation was severe enough that I'd be hospitalized.

Once I got on the Betaseron the major exacerbations ceased.  I've been on Betaseron for 15 years now. I STILL have days when I have lots of energy, am able to do all sorts of things...and days when it's all I can do to get out of bed and feed the four furkids.  But that's not at all the same as having an exacerbation.

I got on Betaseron when it..and Avonex (both interferons) were the only drugs available.  And since I've done relatively well on it, my theory is, "if it ain't broke, don't fix it!" 

Copaxone is relatively new ..and does show great promise.  I think if you're doing well on it..and your doctor is confident about it...why change?  It has the least side effects of the drugs available, too.  I'd probably not switch unless I started experiencing a lot of exacerbations, or had some other compelling reason to do so.

My furkids..with a name like uppityCATS, you ask??     Four cats: Cindy, a momma cat who was badly abused before we got her, and all scarred up from being burned; Cassie, her "kitten" (who is now 5 years old); Tuffy and TabbyGrey, stray (and unrelated ) males who just showed up at our door one day (several years apart).

Spasticity is a very common usual problem with MS.  More a "symptom" of the weak nerve impulses not getting through to your limbs (usually in the legs, but can occur elsewhere). What often happens is other muscle groups -- not "trained" to do so -- try to take over for the weaker muscles, and the poor weaker muscles (not actually weak, but just not getting the clear message from the brain!) try hard to do their job..and fail.  And cramping (spasticity) occurs.  It might well have been there from the beginning..just not as pronounced as it is now.

Anyway...as I always say..I'm not a doctor nor health professional; just a person who has had MS for a LONG time (25+ years); has had nearly all that it can bring, good and bad; and willing to share my experience with it.

Yes, the fasculations (sp??) are related to spasticity..same sort of phenomenon.

When we found Cindy at the shelter she was in a cage with her daughter...how could we take her and leave her daughter behind??? :)

As for the others..I'm sure there's a sign out there somewhere in our yard that says, "this is a cat-friendly house! You show up, get one foot in the door, and you're IN!!!!" :)

Hi, I am new to this site, but not exactly new to MS...Diagnosed on 02 in the first trimester with my twins. My first attack was complete paralysis from the waist down. Couldnt use many ove those lower internal parts either. After the Mri...is showed my first set of lesions....Shortly after the twins were born I experienced my second attack...which was viual. After another Mri...I was diagnosed MS...they started me on Copaxone. I tried that for a a few years, But 'my' body didnt respond. I was having new lesions every 3-5 months...slammed with 1000mg solumedrol...then I tried Rebif...and a few others. Unfortunately my body doesnt take to many of those meds. So its been a bit over a year and I have been on tysabri. So far I have only had two fresh lessions(comming off steroids as we speak) But from the frequency I was having them before two isnt so bad. But I know I really over did it, went out in heat etc. This year Im gonna try and take it easy. Actually I really have no choice but to take it easy! haha Im sure you know I mean, I should be off my steroids in 12 more weeks, and I think after that, Im going to just take it all day by day, minute by minute, and tackle hurdle by hurdle! It is heard of to have as many new attacks as you say, Mine have all been recorded By MRI. Due to the frequency of mine,they needed to verify new lesions. But everyones body is totally differnt...some people, only get the visual, some paralized(Which by the way Im not anymore) Some get very weak. Some just extremely tired. I get all of that...but thats just me. Anyhow, I call my attacks a safari ride.You get in the truck fasten your seatbelt and go along for the ride. I have found myself to be a much stronger person than I was 6 years ago. When I have new episodes, I just hang on and and when I come out of it, wipe the sweat off my brow, and thank God Im still here!!

Gretchen1 said...
Uppitycats,

Hahahaha.  Your description of a cat-friendly sign on your yard made me laugh.  Cats are so smart and such good opportunists.  Our cat would like to get one paw out the door.  He is indoor only as we have too many citters that want to eat cats in our neighborhood.

Love and prayers,

My four are indoor only, too.  And they have no INTENTION of going outside! 

 While they're eager to greet us at the door when we come in, it's clear their message is something like, "Whew!! You're SAFE!!  You went OUT and were GONE and now you're BACK IN and you're SAFE!!!  Now GET AWAY FROM THAT DOOR!!!!"   

We've got lots of window ledges and tables set by windows, and they'll spend hours in the windows chattering at the critters that show up in our yard (we live in the country), but once they got inside, have never shown any inclination to go back out. 

Uppitycats,

Ok that was so funny.  I can just see cats doing that.  We have two dogs also.  I have one that hates to go outside except to do her business.  When the other wants to go out for a romp in the yard she stands way back from the door and begs with her eyes to stay indoors. 

Animals are such therapy for me.  I love the furkids ( as you call them ).  We have the dogs: Larry and Lucy.  Our cat is Mr. Tibbs and he really runs the show in our house.  He even has the real kids trained to meet his feline demands.  And then of course I have my horse, Nick.  But he does not reside at the house.  He is at the nearby stables (which did not burn down in the October fires ).

Love and prayers,

 

msmom,

I'm so very thrilled that you and I both found this board. It helps so much to be able to talk and learn about our conditions and even more so- to reaizle we are not alone.You have a great attitude with your children:) They are such a blessing. and, and, you've had a double blessing!


This site was very informative as I read it from afar, but so much better once I was able to interact.

So glad that your here!
thanks

kiera

I'll be praying for you also. I surely hope its the mildes for of MS, or that it will take a benign course. Theres still so much to learn about it by the doctor's themselves. They admitted that to me, they are just now being able to tell which kind is more painful. They explained it in more depth and said that the pain probably will ease with they dying of some nerve endings (sensation ones, not ones that control movement etc)....

They've learned alot in one years time and I suspect they will learn much more this next yeat.

I know your fear. It's something thats very hard to forget, and sometimes makes a person take things easy in case they might accidentally bring one on. I pray that yours is a mild case with a miraculous prognosis.

2008 can be good for you. Let 2007 go. I feel the same way but the not over doing it when feeling great has helped me to learn to slow down a bit. Hopefully Ill experience many less also.


Love n prayers to you Gretchen,

kiera