I know that MS has an unpredictable course, but I was wondering if any knows if there is an estimated time between a first and second attack. I know it can be years apart, but is there an more common time frame that MS usually follows?
Im a LIMBOLANDER but was told by neuro attacks can occur often in the beginning for some people. I've had 3 distinct ones since 9/07. He said some will go 10-15 yrs inbetween attacks too so the scale is huge. There really isn't a "estimated time" unfortunatly. I've been free of symptoms for 2 months now yet always scared that one is waiting to attack and I hate the not knowing! Not to mention I'm officially diagnosed so no help for me anyway.
Hi, sorry about the dx. You said you have had three distinct attacks since 9/07. If you don't mind my asking, what is a distinct attack? And how do you tell if it is actually an attack and not just nerve damage from the origional attack? Sorry this question is so stupid, but I am confussed about how you tell when one starts and another begins. Do you have to have new lesions to be considered a separate attack? Or is a flare and an attack the same thing? Try not to get depressed over the official dx. I have worried about that for two years now. My 29 year old cousin just died 5 days ago from 2 massive strokes caused by a new birthcontrol pill she was taking. She donated her organs and a 9 year old little girl in Indiana who was dying got her heart. All together she helped 9 people. The sad thing is she left her own two little girls, one 9 and one 5. When you think of it like this MS don't sound so bad!
When i said 3 distinct attacks (my neuro called them "distinct) I mean this:
9/6/07 NEW SYMPTOM = developed ON that lasted till late october. No other symptoms
10/5/07: NEW SYMPTOM = legs got really really heavy, no other symptoms besides resolving ON. Both symptoms resolved by late October. I felt 100% back to normal.
11/24/07: NEW SYMPTOM = Woke up w/ right arm very weak and achy, then legs got weak, vision declined as well. Symptoms lasted 2 months! This time I didnt' bounce back totally. Vision is 80%, I have spasticity in my right leg and fasculations everyday but the weakness etc gone and I'm functioning again. Thus "3 attacks" per neuro yet, he wont treat me.... Go figure!
Just to clarify here. An attack is the same as a relapse is the same as an exacerbation.
To be actually considered a "new" attack or relapse, the onset of new symptoms or worsening of old symptoms must follow a period of "at least a month" where the person was symptom-free or their symptoms were stable (not worsening). That month cannot be immedicately after a course of steroids. (But, I can't find any hard data on how far out it needs to be from the steroids. I would think a couple weeks)
But, there is no typical range. In the beginning it can be a few months to as long as 12 years or so. I have also gotten the impression that it was often more frequent early in the disease, but there is still a huge range.
I read your posted comments and wanted to reply and say that I too have been diagnosed with MS and the DR who diagnosed gave me every possible incorrect piece of info imaginable. She told me to go DIRECTLY (that minute) to Social Security and apply for assistance as I could expect my life to change drastically and immediately. She said that I should begin preparations to make my home wheelchair/Handicapped accessible right away because I would most certainly be wheelchair bound at any moment and that I should also expect to be denied any kind of medicare/medicade assistance at least on my first application so the sooner I started to apply the better. I now know this is was only the worst case scenario, and my research has shown that the percentage of cases that become that disabling, that fast, is incredibly small. That said, this happened nearly two years ago and I have been fortunate enough to have had very little problem beyond insane fatigue and leg spasms/discomfort that has been determined not to be Restless Leg Symdrome. Since my diagnosis (confirmed with both MRI and Lumbar Puncture) I have felt lucky to NOT HAVE FEAR of attacks but rather seize EVERY single opportunity to do whatever I want to do when given the chance to do it. I hope that I have not in any way implied that your fear is unfounded nor unreasonable but rather wanted to let you know that diagnosis does not really mean that you have no hope. Hope this helps you, and that you at least know that you are not alone!
I just saw my neuro Wed., and he said I am officially in a relapse. I was just actually diagnosed 2 weeks ago, but started the parade of weird symptoms and doctors and tests almost 7 months ago now. I guess the original symptoms had resolved enough, and these ones were different and more dramatic. He said he could do another MRI right now but it may or may not show anything and wouldn't change how he was going to treat it.
So I started my first course of oral steroids yesterday. He really wanted me on the IV type, but I was able to talk him out of it for now. I really didn't want to do them at all, but he said my body really needed a break. The fatigue is hideous right now....
I asked him if it was a bad sign to have a relapse so fast, and he said "Well, we won't say that just yet. We need to give it some time and have you develop a history and see how it plays out." I would have preferred for him to say "Oh no - it's perfectly normal to happen like this", lol. Looking back, at things over the years, I think I have actually had this a long time, but nobody ever realized it.
So I came late to the treatment and diagnosis party... I start the Rebif today, and hopefully that will help me. This has been a rough 2 weeks, with alot coming at me fast. Hoping that things slow down a bit from here.... :)
I noticed Quix's comment about frequency of attacks and wanted to clarify MY reponse earlier. Quix is exactly right. There must be at least a month between "attacks" to be classified as true attacks. What I meant in my previous posts that I have had symptoms abate for a few days, then I go right back into my previous attack. The Neuro said that I never came OUT of my attack, just had a slight repreieve of symptoms or possibly did not notice them as much. But the attack was still there and active.
I'm sorry if I misspoke during my earlier post and caused more confusion.
I was diagnosed wid ms 2 months back. There was numbness in my right hand. I got i/v and oral steroid treatment.numbness now persist only in 2 fingers(index n thumb) but recently i m feeling nausea n anxiety with tightness below ears around angle of jaws. Is this a second attack?
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