Gap between CIS and second attack

[Suzie9]

How many people on here had an attack years ago, then not much disease activity and things flared up years later?

It is just a query really as I am interested in the different rate of progression. I know of one man, he was running around playing football at age 31 and now at 42 is disabled, walks with a cane and struggles doing lots of things. I know of another man and in a similar time frame and age, had one attack then was fine for years but took a serious turn for the worst in the last few years and is actually more disabled than the first man I mentioned.

Both originally diagnosed with relapsing remitting MS. The second man I mentioned is now diagnosed with secondary progressive MS.

On researching it appears that this long gap would be a good thing and an indicator of a better prognosis, however I keep finding people who say otherwise and hearing stories similar to the one I mentioned.

Does anyone have any similar experiences with a long gap between the first few attacks? Is this why some countries push for treating CIS because the disease is still progressing, though not always visible?

Thanks. Aimee.

[kwarendorf]

I should add that in my case it was 18 years between attacks 1 & 2. Then it was 18 months between attacks 2 & 3. Third one was a doozie and it happened this past July. I have since been DX with SPMS.

[kwarendorf]

I think the criteria says that there should be 30 days from the end of one relapse before the beginning of the second.

[gnikme2]

What if the attacks were a week apart? I have had two in the past month and have yet to see Neurologist. Below is my background:

Had MS symptoms (weakness and numbness in right arm and leg) over a month ago and was diagnosed with neck strain. Doc said muscle was pushing on nerve and gave me some meds. After about a week pain,weakness and numbness went away and all was normal. A week later woke up with severe pain in my neck again. The next day I was experiencing the same weakness and numbness. By the end of the day my arm was completely dead with some numbness in leg. But this time I had symptoms of MS hug. No one could understand it. It went away after two weeks, no pain just uncomfortable. My leg is normal but my arm is still weak with little muscle control. Got Cervical MRI done this past Monday and a lesion about 1.4 cm was found in my spinal cord at C3. They said it might be spinal cord MS but not sure. Have to get tests done.  

[Pablo_Morphy]

"Yes, time will tell. And to be honest I don't even worry any more. what's the point? What will be will be and I'm healthy now.  With the odd thing I do get and being told I am at extremely high risk, I expect I will be diagnosed at some point. If not that's great but I am realistic and prepared too."

I'm 100% with you.  We are in the same boat, and we need to remain hopeful! :)

[Suzie9]

Thank you for all your comments. Some interesting reading.

I had heard that you could now get diagnosed off repeat MRI. But they don't repeat the MRI. I had a few MRI's around the time of getting my CIS diagnosis then that's it. Fair enough I suppose as they are costly and if you are generally fine then why bother repeating MRI's!

I have had minor issues, balance things and sensory things but absolutely nothing serious or particularly significant. I also did the looking back a few years to see if their was anything that may be MS related and I believe there has been, and though mild still seem they could possibly be something. When I was about 18 I had this contracting feeling around my trunk the feeling moved up to my chest. It only lasted around 20 mins. It was bad because I remember being scared and asking my Mum to ring an Ambulance. In the end it wore off so we didn't. Clearly this wasn't an attack though or at least would not be classed as one due to the length of time it lasted but does sound similar to the MS hug.
Then years later I had spells of Virtigo. At least I think it was. doctors just sent me away saying I was fine but when driving or on stage performing,(those where the only times), I felt weird and dizzy. Would nearly black out sometimes. This went on for weeks.

On mentioning these to my neurologist however she said she can't really count them as they were not documented so my attack 4 years ago with lesions ( 4 in all on brain and spine), was classed as my first attack.

Yes, time will tell. And to be honest I don't even worry any more. what's the point? What will be will be and I'm healthy now.  With the odd thing I do get and being told I am at extremely high risk, I expect I will be diagnosed at some point. If not that's great but I am realistic and prepared too.


It will be good when the day comes when they can predict MS more, and tell which people with CIS are going to progress and which are not. Then at least they can be treated earlier and hopefully have a better outcome for people like the Man I mentioned in my first post who was not on any treatment until things got really bad.

[COBOB]

I read the title of her post, and tried to answer the three questions in her post.

An increased time between CIS and the second attack would not be a good indicator of minimizing disability.  I think Suzie9 has the correct idea, in that, some countries choose to treat CIS with DMDs to limit the damage as much as possible.  I guess my point is that under the new criteria, there is no need for a second attack.  DIT and DIS can be satisfied by MRI changes. Under the new criteria, MRI changes are considered evidence of clinical disease progression.  

The time between attacks has little to do with disability.  The mean rate of relapse in
RRMS is .5 -.8 relapse per year.   One lesion in just the right place (cord, brianstem, etc.) could have a profound effect.  Brain atrophy and axonal loss seem to be better predictors of sever disability than lesion load.  

Bob

[sllowe]

Yes, Bob the recommendations simplify the guidelines and they are particularly going to be useful where CIS is concerned, something past recommendations hammered on over and over.

Suzie9 asked specifically about CIS, the gap and the 2nd attack. To make her understand the scenario a bit clearer (it's confusing to most), regardless of the refinement or simplicity of the guidelines, definite MS would be strongly considered after the scenario she described.

-Shell

[Pablo_Morphy]

I'm also in the clinically-isolated-syndrome virtual waiting room... hoping another attack doesn't come around, or comes around years down the road.

However, in practice, this probably was my second attack.  I think my first attack was back in my early 20s.  I had an undiagnosed attack, with headaches, scotomas (small holes in my vision), and other sensory symptoms.  The headaches went away after a year.  The scotomas didn't and remain until now.   Efforts to get a diagnosis (of any kind, with no one suspecting MS except me) were of no avail.  I had to wait until last year's bout of optic neuritis to get an MRI and at last know that I probably have MS.

In the past 9 months, I've struggled with the possibility that I have a high risk of conversion to MS, and my last attack left some minor sequels (including daily headaches, see today's post).  However, the more I think about this, the more I'm convinced that the only way of finding out what's going to happen is... well... to wait until it happens.  Efforts to forecast the future are pretty much futile.  It's probably MS's best (and most useful) lesson for all of us.  After all, everybody is surrounded by risks and dangers of all kinds since the day they are born, and then go on with their lives, as we say in Spanish, 'como si nada' (as nothing would happen to them).  

It's tough, really tough, but we have no better alternative than preparing for different scenarios, and hope for the worst.  Your best tool to influence the process is to get to know your body (I'm only starting to do that); take DMDs if suggested by a doctor, and get to know this condition/disease as much as possible with a little help from your friends here at MedHelp and elsewhere.  More importantly, if you are healthy, go on with your life as much as you can.  That's what others have told me and that's what I'm trying to do!!!

[COBOB]

With the 2010 McDonald Criteria, you don't have to have a second attack.  DIS and DIT can be satisfied by serial MRI with no change in patient symptoms.   http://onlinelibrary.wiley.com/doi/10.1002/ana.22366/pdf

Bob

[sllowe]

Hi Suzie,

Nice to see you. Comparing one to another is where the confusion sets in because no two MSers are exactly alike.

But, to make is simple.......once you have the 2nd attack, it's no longer CIS. The gap is then closed.  It's definite MS unless another cause/culprit is discovered.

The recommendation to treat CIS with DMDs is based on the success rates of the meds with delaying disease progression (like you allude to) and to minimizing relapses.

I've not had another large attack since my 1st. Clinically I'm not much worse, and imaging no great increases in lesion load. Your right progression can be totally invisible....
Hope this helps!
-Shell

[COBOB]

I should have added the I have had 3 attacks about 3 months apart (ON, TN, ON).  Two were the same right eye optic neuritis about a year apart.

Bob

[jujuminx]

Amendment...technically, I guess I had two attacks last year. One in April and one in late June. The April attack didn't produce a dx, just the same tests as before w/ negative results.  Sx were fading when I went on a trip to a central american country and sx came back but on other side of body.

Very hot, lots of physical activity and I was totally ignorant about my conditon.  Numbness moved from fading left to right side and I developed the MS hug and right side numbness. So, I guess since attacks two months apart, they are considered both relapses.

No relapse since then and am much more careful about taking care of myself. This goes to show you that a dx can lead to less replases. If you know what you have not only can you take DMD's but you can be less stupid about toughing things out.  Would have never done the things I did during the trip had I known I had MS and I would make it worst.

Julie

[jujuminx]

Well, I am one with years between attacks BUT I was only recently dx so that is an assumption on the part of my neuro and myself.

First attack in my late 20's (numbness on left lower part of body) which faded after 2 months. Same thing happened about 8 years later. Only sx was numbness/slight tingling on left lower side.  Didn't really effect my life and I was blissfully ignorant about what it was. Then the latest attack last year, about 10 yrs after my last attack came and I finally got the dx.

Most recent attack last year was by FAR the worst.  Lasted twice as long as it ever did and was much more painful and debilitating.  Effected my right arm (temorary weakness), had l'hermittes, internal shaking, MS hug, painful squeezing in my feet, heat sensitivity, numbness/tingling on right and left side, trouble regulating my body temperature in general, insomnia due to the constant pain of it all, etc.  It was horrible.

Took almost 4 months between last attack and dx of RRMS. Have been on copaxone since 10 days after dx. The only sx I can ever remember having between my first through third attacks is the sensation of water running over my legs/feet at times.  I told my gp about this during my annual and he attributed it to my training for a marathon.

This time around I have odd sensations from time to time (probably every second day or so) and occasionally will get a burning in my right foot, especially when I am anxious or stressed, a tingling in my spine, etc but nothing close to hurting or bothering me.

I am hoping the copaxone will help me stretch out my attacks and lessen the sx when they come. All my lesions on the spine (3 to 5).  It's hard living with the uncertainty of MS but what's the alternative?  Doing what I can and hoping for the best.

Julie

[COBOB]

Hard to say. There are attacks and lesions, but these do not correlate well with disability.  Some studies have indicated that brain atrophy and retinal thinning  as measured by OCT may have a better correlation to disability.

I think it kind of makes sense.  Demyelination will cause conduction problems, but loss of axons mean loss of signal and a reduction in brain volume.  Most of the research shows that loss of axons and brain volume can lead to increases in disability.   In a population not treated with DMDs, there were studies that indicated increased intensity and frequency of attacks the longer someone lived with MS.  I;m not sure if that is true for people with RRMS where DMDs are effective (maybe 30% for the CRABs.)

I think we will have to wait longer for the retrospective study data to come in.

Bob