Yup, think that's me too! I will pick one for your poll. I will take the small continual over the big incapacitating anyday.
Thanks Girl, for the help:) Put it in a bit of perspective for me.
-shell
I had 3 major flairs last year, and I still haven't recovered from the last one in November. I start Tysabri this week.
In previous years, I had 1 - 2 minor flairs/year, each with total recovery.
Jo,
Thanks for joining in and welcome :)
What DMD if any are you taking or did you just use oral steroids for a brief period? I have been on 3 of the DMD's and feel scared that none are doing it.
Thanks for sharing what Quix said to you. It seems to sum up the way I'm feeling that the line between relapse and remission is blurring for me and rather rapidly now too.
Hugs,
Erin :)
Shell,
Always a difficult one aren't you girl? LOL
I was confused like you because I would compare my flares with the biggest one I ever had and nothing has ever been that big. That was when the phones were ringing off the hook and all of the doctors that had dismissed me wanted me in the hospital that day!
The thing is that my flares are more ON and loss of balance these days. Maybe the DMD's are "holding" me? The fatigue never goes away and I can't remember the last time my baseline was holding. It's like if you think of your worst flare these constant flares don't compare but the damage is greater than that one major one that got me dx.
My vote was for more than 4 major flares per year and I'm not happy about it.
Why did you go off and on your Rebif? I don't have a clue what to do now. Keep with the Avonex and take Solumedrol every time I flare? I have been on it like way too much if that's possible. Yuck.
Thanks for chiming in so I could rant, ha ha.
Hugs,
Erin :)
Erin, I'm so new to the MS community as a diagnosed patient that I don't really know what to say...My worst sxs began last February 2009, though I'm fairly certain I had transient and fleeting sxs for years prior to last February and they simply went undiagnosed. But last February, the sxs came in multiples and slammed me hard. It became easy to diagnose and the doctors wasted little time doing it. Still, my PCP and orthopaedic surgeon said that while they suspected MS, it would take a neuro to dx it, and I was warned that neuros "never dx MS--they just don't like to". So I waited anxiously for that first neuro visit which took place in late July 2009 and was relieved when the neuro dx'd that same day. At first, he said he wouldn't, but it didn't take him long to change his mind and confirm that I have MS. I was placed on a round of Prednisone for 2 weeks which helped interrupt the spike I was in for a short period of time. But by October, it was building again and has not let up. So I am not sure how many flare-ups I have in one year since I am newly diagnosed. And I am not sure that the flare-up that began last February isn't still going on, all these months later, with just a small interruption in time due to Prednisone. As Quix put it recently to me, it seems that for me, the line between relapse and remission is blurring, and that rather rapidly too. Please forgive the poor response to your question! I hope it helps your research some! jo
Hi Erin,
I very much want to participate in your poll, but don't know what selection to make. I started Rebif in 07, and have gone off of it a couple times. So, I'm asking for help to be able to participate in the poll and this is why.
I compare all "attacks" to my 1st one and none of them are as bad as that one - so, in my head, I don't count them. Does that make sense?
I have big ongoing issues that last for 3 - 5 months at a clip, they change from one thing to another, but still do not lay me up like that 1st attack. Is this the Rebif at work? Would they be worse if I was never on it? Would all my probs be like the 1st one if I were not on it?
Ok, last question(s) are these true attacks or exacberations? My lesion count has not gone up that I'm aware of. Are these pseudos? Aren't we suppose to be better inbetween attacks? Aren't you glad you started this poll? ha/ha
I'm sorry :(
-Shell
I dont know? I still need to work on figuring out a time line... I have always tried to keep track of my symptoms for the last 10 years, but its so crazy!? Over that time Dr's have told me it so many different things I lose track of everthing
Hope everbody is having a allright day!
Live, Laugh, Love
Mel
I was diagnosed in 2001 with a major attack that took 6 month to resolve. Took IV SoluMedrol. (I think it helped) At that time I had several atypical brain lesions and a "healed" cervical lesion.
No relapse since. Perhaps a couple of pseudo-relapses following flu or infection. A few new lesions since dx. Was on Copaxone, tolerated it well but stopped for other reasons.
Since I've been diagnosed less than a year, I will have to take my neuro's answer to this question. He called my sudden weakness and loss of strength in my left leg a major flare and then this past summer's vertigo issues another major flare.
In between though I have either pseudo-flares or minor flares in connection to UTIs that last at least a week. Not sure how to classify these but these leave no residual effects unlike the major flares.
I'm taking Copaxone.
Ren
I selected the first option as that best describes my situation at present, although it's hard to determine a pattern yet, having been dx'ed a little over 2 years ago.
My flares have occured as follows:
June 2006 - minor (first sign of MS)
Sept 2007 - major (dx'ed soon after)
[started and stopped Rebif Feb - Apr 2008]
March 2008 - major
[started Copaxone June 2008 - present]
Dec 2008 - somewhere between minor and major
So over a year between relapse #1 and #2; then another relapse 6 months later; and another 9 months later; and none for past 14 months.
The time is stretching between relapses, and the only relapse I've had since being on Copaxone was a brief bout of ON. Although it was very painful and I was treated for it at the ER the night it came on, I don't think of it as major as it was over within mere days (with the help of SoluMedrol) - no residual pain or vision loss.
So hard to know for sure if the DMD is working, but it would seem to be.
Sorry to hear about your frequent relapses! I guess I am not alone and I bet I know where you fell in the poll!
I'm glad that you are going to see the doctor soon so you can discuss options. I am afraid of the Tsabri because of the warning about possible brain infections.
It's all so confusing because I was on Copaxone and didn't have many flares but had lots of new active brain lesions at the end of a year so they took me off and called it a failed DMD attempt. Now I am on Copaxone and according to my last MRI in Sept. not much new brain activity but one constant flare and physical symptoms keep progressing. What the heck, lol?!!!!
Keep us posted on what you decide and good luck!
Hugs,
Erin :)
Let us know what you decide.
Thanks for "voting" and sharing!
I am flying on IV steroids right now, day one of three hoping to come out of this flare.
I have already "failed" on Copaxone according to the MRI showing progression. Now the Avonex seems to be one BIG flare after another so I'm scared that I am going to run out of options and will soon be Secondary Progressive instead of RRMS.
Thanks again for sharing. I hope that we get a big pool to compare these numbers so I can share with my doctor when I see her and ask her opinion.
Hugs,
Erin :)
this is my fourth relapse in 6 months. On copaxone think I will need to look at an alternative. Will be reviewed in 2 weeks post steriods with a vew to changing to rebiff or tysabri. Has any one similar experiences?
I was on Betaseron for one year after Dx. I had 3 flares that required steroids. They started mild and built. I am of the meds now and trying to concieve. Had a minor flair and a round of solumedrol.
HI there
Since starting on Betaseron 18 months ago I have only had one flare, it was a bad one, before the DMD I used to get several "minor" flares a year.
Hope this helps
Mand
Hey I started Avenox in Sept and the day i started i relapsed for a week and then relapsed again in oct (very severe relapse). Doc said the one in Spet was actaully the same one getting worse to Oct. I dont belive that however lol so i say 2 and one in April was not on Avenox tho nor diagnosed yet. They said it takes a lil awhile for Avenox to work and just got out of my last attack maybe a month ago. ( yeah it lasted long) so i'm hopeing it stays contain with Avenox! I still have everyday symptoms one you can see and the ones you cant it all varies but no attack since my last one ended in december. From first attack to 2nd was 6 months So im kind of scared of this coming April hoping the 6 month thing dont repeat itself! lol