Wondering how we compare as to frequency

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Kiera
Regular Member


Date Joined Dec 2007
Total Posts : 364
   Posted 1/4/2008 4:31 AM (GMT -6)   
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.
Every day brings us closer to what we reach for .........in all things.
 
Kiera


mystery reader
Regular Member


Date Joined Jun 2007
Total Posts : 257
   Posted 1/4/2008 7:49 AM (GMT -6)   
I have only had one major episode (last Spring), but it lasted about 3 months, and I have not recovered completly. I have what I believe to be residual damage. Only time will tell if these problems improve or worsen. I am hoping tysabri might help although that is not it's purpose.

Numbness on the left side of my body went away except for the bottom of my left foot, but .... Primarily, I have pain/squeezing in my left rib cage around to middle of my back, stiffness (occasional spasms) in my left leg and both knees, and a buzzing/burning pain in left arm and the top of my head. (Neurontin helps with that). I need to use a cane to get around whenever I am walking any distance. I do not use it at home except some evenings when I am really tired and slow moving.

And or course there is the fatigue which is much better than during my flare where all I wanted to do was lay and stare at the ceiling. Now I only do that for a few hours a day. LOL!
Barb/mystery reader
Diagnosed April 2007


uppitycats
Veteran Member


Date Joined Jun 2005
Total Posts : 2135
   Posted 1/4/2008 8:20 AM (GMT -6)   
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 am not a doctor, nor health professional, and don't pretend to be one, here.....


Kiera
Regular Member


Date Joined Dec 2007
Total Posts : 364
   Posted 1/4/2008 4:14 PM (GMT -6)   
Their description is probably more accurate. My problem with understanding this is 16 days of nonfunctional with a following 60-65 full days of feeling normal w/some mild residual, and yes the next episode does bring new things. Such as this last one with spasticity. This is why it confuses me. Spasticity wasn't there and was seperated by 60-65 days of good? So to me that is new symptoms seperated by time and space and things that last 24hrs or more.

How you explain it in your second paragraph makes it more understandable to me now. You also have me now considering to slow down on the good days. I may be bringing these on myself with all my hopping and bopping when feeling good. They didn't explain that part. Thanks. I guess I felt like freedom, and use it while it's here. I'll remember this though, as Id much rather have it milder than I'm having it. When I look back and see all I've done in the good days it makes sense of how much worse the bad is. The correlation IS there.

Question for you? I asked at the institute about interfuron and they said No, stay with copaxone, we use it all the time. I did find the other lady inspirational. I also find yours inspirational. Which leads to my question. Do you think I should ask about an interfuron with my local neuro? I know that noone has definitive answers but just as I take the b6 that the 67yr old recommended, id like to know what you think about this?

Looking back after reading this post. I can now realize that I probably had more like 4 exac's due to the same symptoms in the other ones. Wow, to think I did this to myself hurts: ouch lol.

What type of furkids do you have? These aren't the squirrels I saw are they?

thanks
kiera

Gary? If your reading this, do NOT do what i did, which was act like I was 12 yrs old on the good days!
Every day brings us closer to what we reach for .........in all things.
 
Kiera


uppitycats
Veteran Member


Date Joined Jun 2005
Total Posts : 2135
   Posted 1/4/2008 5:43 PM (GMT -6)   

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??  tongue    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.

 


...I am not a doctor, nor health professional, and don't pretend to be one, here.....


Kiera
Regular Member


Date Joined Dec 2007
Total Posts : 364
   Posted 1/4/2008 5:58 PM (GMT -6)   
Thank you alot. I'm glad that there is someone here who has the willingness to share their experience. Just like the lady I had met, this gives us all hope.
Yeah, CATS<<<my bad, haha. I should've known but tend to seperate s/n's from who a person is as some are deceiving, like dogman , i've found is more of a prowler type guy than an owner of dogs (in some cases) :)

Awwww, how horrible that happened to Mindy, but great that she found a loving home. Able to live with her kitten as well. That's terrific. The other two probably spied you out and realized there was a home for them as well. I had a little kitten recently who died. I had bonded greatly with her and it really tore me up. She was my buddy during good and bad. Unconditional love that they have is sweet. Her inability to retract her claws wasn't cute at the time though! (but not her fault).

I'll remain on the copaxone for now as I've really only began steady on it as of the past few months due to the guessing/limbo game.

Do you know if fasciculations (sp) are common as well? I get those in various muscle groups. Used to just be my shoulders but as of late they are in the areas that were severely spastic?


thanks again

kiera
Every day brings us closer to what we reach for .........in all things.
 
Kiera


uppitycats
Veteran Member


Date Joined Jun 2005
Total Posts : 2135
   Posted 1/4/2008 6:04 PM (GMT -6)   
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!!!!" :)
...I am not a doctor, nor health professional, and don't pretend to be one, here.....


Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3518
   Posted 1/4/2008 6:16 PM (GMT -6)   
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,
Gretchen
Diagnosed with MS July 2006
Co-moderator MS forum
 
I was strongest when I laughed at my weakness.
Elmer Diktonius
 
 
 


msmomof4
New Member


Date Joined Jan 2008
Total Posts : 14
   Posted 1/4/2008 6:53 PM (GMT -6)   
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!!

rhondab
Veteran Member


Date Joined Mar 2006
Total Posts : 2146
   Posted 1/5/2008 12:00 AM (GMT -6)   
Hey Msmomof4

Cute name! Welcome to the board! I"m so sorry for u'r diagnosis and for the timing as well. Wow!! While preg with twins! U"ve been thru the ringer for sure. I'm so glad the Tysabri seems to be helping and i'm keeping u in my thoughts and prayers that u'll continue to improve. Take care and post often so we can get to know u! Again, welcome to the board.
rhonda
Co-Moderator, MS Forum
 
*~*Sometimes the Lord calms the storm. Sometimes He lets the storm rage and calms His child.*~*
 
Things that make u go hummmm......
*I wonder how much deeper the ocean would be without sponges.*
*One day without sunshine is like...um..well...night?*


uppitycats
Veteran Member


Date Joined Jun 2005
Total Posts : 2135
   Posted 1/5/2008 5:21 AM (GMT -6)   
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!!!!"  tongue   tongue
 
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. 
...I am not a doctor, nor health professional, and don't pretend to be one, here.....


Kiera
Regular Member


Date Joined Dec 2007
Total Posts : 364
   Posted 1/5/2008 6:10 AM (GMT -6)   
Well doh at me. I called her Mindy lol. So sorry Cindy, please forgive me! The sign made me laugh also. We all need a laugh at times for certain!

Msmom, Bless your heart. You have had it rough in the very beginning. Hopefully as it's beginning to look like, and with slowed pace, they will wax and wane.

My doctor decided my mri's would be once a year, so I won't know for quite some time the damage done (if any or alot).

Did you name your twins names that rhyme, and do you dress them entirely different or the same?
Was this your first pregnancy?

Also (im aksing alot i know), do you care to share how old you are? Sounds like your younger. Again, I'm sorry you've been through all of this at that timing. It had to of taken a toll.

You'll be in my prayers

thanks
kiera
Every day brings us closer to what we reach for .........in all things.
 
Kiera


Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3518
   Posted 1/5/2008 9:31 AM (GMT -6)   
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,
 
Gretchen
Diagnosed with MS July 2006
Co-moderator MS forum
 
I was strongest when I laughed at my weakness.
Elmer Diktonius
 
 
 


msmomof4
New Member


Date Joined Jan 2008
Total Posts : 14
   Posted 1/5/2008 3:23 PM (GMT -6)   
Haha I do not dress My twins the same, I think My son would hold a grudge if he looked like his sister! haha They are fraternal! They were actually My third pregnancy. We had two girls and were trying for a boy and woo hoo we got one of each!Im 34..I used to think I was young, til I began feeling like Im 80. Haha No jk kidding, kind of, I do feel older on my down days. But I have finally decided to make the BEst of the down days...that way I may physically be down, but My mental state stays intact! Do any of you have children.
And Ronda.. Love the words about God Calming the storm....In fact the song that gets me through thw worst is " I will praise you in the storm"

I do hope to be able to get in here more...all these years this is my first chat with people with Ms ever!!! I have met a few at the MS walks, but never had contact since!!

Thanks for letting me in here!!!

Kiera
Regular Member


Date Joined Dec 2007
Total Posts : 364
   Posted 1/6/2008 4:08 PM (GMT -6)   
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


Every day brings us closer to what we reach for .........in all things.
 
Kiera

Post Edited (Kiera) : 1/6/2008 3:12:04 PM (GMT-7)


Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3518
   Posted 1/6/2008 7:28 PM (GMT -6)   
It took me a while to decide whether or not to post to this one.  I am a bit superstitious.  I am pretty newly diagnosed.  I have only had three flares ever, but those three flares happened in a ten month span.  The first flare was rough and the last flare was rough.  The last one took me three months to recover from and that was with five days of solumedrol.  My New Year's Resolution ( aside from no more swearing tongue ) is no flaring in 2008. 
 
 
 
Gretchen       co-moderator MS board       diagnosed with MS July 2006


Kiera
Regular Member


Date Joined Dec 2007
Total Posts : 364
   Posted 1/6/2008 9:53 PM (GMT -6)   
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, tongue

kiera


Every day brings us closer to what we reach for .........in all things.
 
Kiera


Kiera
Regular Member


Date Joined Dec 2007
Total Posts : 364
   Posted 1/10/2008 6:17 AM (GMT -6)   
Ms Mom,

Yes i have 4 children, 2 grown and two still under 18. No twins though. Id just read about another lady who while pregnant felt alot of tingling in legs. The doctor assured her it was the baby laying on some nerves (made sense at the time). Then it got a bit worse right before delivery. After the birth she went back to her followup and he asked her "all those tingles gone , aren't they?), she said, "No, as a matter of fact they are worse than ever)...this made him suspicious and it's a good thing. He sent her to a neurologist and sure enough she has MS.

I've read that some with MS go into a remission during pregnancy. I've also seen many find their first obvious symptoms brought out by a pregnancy. I personally recall so much RLS during my last one and days and days of back pain and was also told baby was laying on a nerve. The baby couldve been, but now i know that area well and it's still a place that tingles and pokes.

I hope that you post often. So glad to see you here on this board!

thanks

kiera
p.s. I agree that some have episodes more often than others, alot at times. Some have very few at all. Again it reminds me of the No two Ms persons are the Same!

If this were all one large relapse, id of had a 3yr relapse!


Every day brings us closer to what we reach for .........in all things.
 
Kiera

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