8 years in remissions or was it even MS?

[jess]

In 2008, for about 3 months I had paralysis, parasthesias and muscle contractions on my right side, including a color shift and blurred vision in my right eye. At the time, the chief of neurology at a large medical university thought maybe Devics or MS. I had a negative test result for Devics- but was never re-tested and was given the impression its possible to have a false negative. I tested positive for a delayed visual evoked potentials. My visual field was otherwise ok. Nerve conduction wasn't done at the time because of delays in treatment and I was already recovering. For another 3 months (after the initial 3 of severe symptoms) I recovered slowly and by 6 months from onset I was feeling mostly like my old self. For another two or three years, the remaining weakness and slight but not invisible reoccurrences (hips felt tired/weak, hard to stand, wear out fast, bad concentration, that kind of thing) dwindled and for the last few years have been gone completely. I occasionally have some concentration issues, but its mostly fine.

Fast forward to February 2016, it will be 8 years since this happened. I'm starting to wonder if this duration of time means it was a random event, who knows what it was, or if the hammer could still drop. I rely on my brain and eyes for work and if it comes back it will mean the end of my job.

Now the point of my post- what's the realistic odds of it still being MS?

[freeinhou]

Hey jess -

Just a suggestion. Don't worry about it.

MS has really not been a factor in my daily life, and I'm grateful for it. I was told in 1988 I had MS and my last MRI in 2003 showed about 35 lesions so I guess I really do have it. I couldn't tell you if I'm RR, CP, or any of the other fancy descriptions they have for it now but I don't worry about it.

Enjoy life!

Tom

[SNOOPY]

Hi Jess,

It doesn't appear that you ever received a definite diagnosis. If you are in doubt about please seek the advice and testing of a Neurologist. It is possible to go years in between exacerbations (relapse, attack, flare-up). As freeinhou mentioned it is also possible to have MS with minimal deficits of the disease. MS is different for each of us.

[jreagan70]

Now the point of my post- what's the realistic odds of it still being MS?

In the field of MS, there's a condition called Clinically Isolated Syndrome (CIS). CIS is an episode that looks just like MS, but it's a first and only episode, which is why it's called isolated.

A diagnosis of MS requires two of those episodes, with supporting evidence including lesions visible on MRi that are characteristic of MS. In MS, MRI is the gold standard. It's very difficult to get a diagnosis of MS without MS-typical lesions on MRI.

The questions come up over and over again about why MS isn't just diagnosed at the first episode and why is there a need for the classification of CIS. The answer to both of those is that not everyone with CIS goes on to develop MS. If everyone were diagnosed at the first episode, there would be many people who would be wrongly diagnosed (that happens sometimes anyway) because they don't have another episode and don't experience any other signs or symptoms of MS.

This is what may apply to you. In CIS, people who have brain lesions on MRI that are characteristic of MS have a 60 to 80 percent chance of going on to develop clinically definite MS. People with CIS who don't have those characteristic lesions have about a 20 percent chance of going on to develop clinically definite MS.

Using that as a guideline, you can go back to your MRI and figure out whether you fall into the high risk or low risk category -- what you had was CIS.

And as has been pointed out, it's possible for MS to go for years between relapses and for the lesions to not cause symptoms. If you haven't had any follow-up, that remains a major unknown.

Transverse myelitis -- which is associated with neuromyelitis optica -- is known to have isolated occurrences. It would take a neurologist to determine how your episode fits in with that.

In addition, some people have an isolated episode of optic neuritis -- some of them recover, some of them don't -- and never have another one.

The odds of whether what you have is "still" MS depend on what it was you had back in 2008. If you want to consider what you had to be CIS, you can use your old MRI to determine whether you're in the 80 percent group or 20 percent group. If you want to consider that what you had was an isolated incident of something else, there's no telling what the odds are of having another episode.

People who possibly might have MS often spend some time catastrophizing about what horrors might occur in their lives somewhere in the future because of MS. But for some reason they don't spend any time catastrophizing about what might happen to them if they slip in the bathtub or get hit by a bus, which has a higher chance of happening and which could happen tomorrow. So it's important to keep things in perspective.

If you're relatively happy, you can leave it alone. If you want to know what's going on, you can have another MRI. You'll just have to decide whether you'll be happier knowing or not knowing.

[pennstater]

I hope you don't have it. Are you followed at all by a neurologist? I did go 13 years between events, and another 8 years before it began to interfere with work. Even with the issues, I would be labeled "mild".

I wouldn't spend time worrying do I or don't I. Enjoy your life. If you have symptoms though, then I would get checked. If you do, then the main decision would be if you want to try meds to slow progression or if you want to see how you do off meds.

But if you have been healthy since, keep living your life as you have.

[wootms]

Hi freeinhou

Apologies for the hijack, but anyway... freeinhou, wanted to ask you a question / advice, on your lifestyle No obligation, but as someone (me) who struggles to look after themselves, I like the sound of your care-free laissez faire approach.

[Jules A]

What did your MRI look like? Its very possible to have long periods between relapses with MS but of course that doesn't mean you have it or don't have it. I hope whatever it is/was stays dormant!!

[AriD]

As someone who went almost ten years between relapses, it's definitely possible. Diagnosed 1995 and had a few years of "short" relapses of leg weakness, vertigo then almost back to normal. Working full time keeping busy despite left leg weakness and some balance issues persisting. Had myself thinking that I could handle this.
2011 everything began again with a vengeance. Had major relapse, came on suddenly in the middle if the night three weeks before my sons wedding. It took me a year and a half to get back to work almost full time and definitely have never been the same. Have had several more relapses since and struggling to keep up.
In the midst of another relapse now, not the worst but real tough. just about done with steroid taper but wound up with infection from being on steroids. I am now really forced to look at whether I can continue to try getting back to work now. My legs are so weak.

My point in all this is that I went all those years kind of ignoring my diagnosis. Something I'm aware many of us can't do. My doctor then was so back and forth about it all- yes I had MS should consider DMT but okay if didnt take one especially if the side effects interfered with being able to work. I was happy going along , wouldn't take back all those wonderful years. But my current doctors say I could be in a different, maybe better place if I was treated during that time. Who really knows No regrets can't look back

Just wanted to say to keep it somewhere on your radar and be vigilant to anything that may affect the course of things for you. Enjoy life but take care of yourself too. Hopefully it will never rear its ugly head again for you. Take care.

[poppydarling]

My point in all this is that I went all those years kind of ignoring my diagnosis. Something I'm aware many of us can't do. My doctor then was so back and forth about it all- yes I had MS should consider DMT but okay if didnt take one especially if the side effects interfered with being able to work. I was happy going along , wouldn't take back all those wonderful years. But my current doctors say I could be in a different, maybe better place if I was treated during that time. Who really knows No regrets can't look back

Just wanted to say to keep it somewhere on your radar and be vigilant to anything that may affect the course of things for you. Enjoy life but take care of yourself too.

I agree with this completely. I had optic neuritis at the age of 26 and didn't have another major symptom until I was 40, when I was officially diagnosed. That's a long time to be untreated with the disease running rampant. But I felt great and didn't worry much about it, and did pretty well until about five years ago.

Even though my doc says you can't look back, I do wonder how I'd be doing now if the damage hadn't been done already, back when I didn't know I had MS and then after diagnosis, when didn't feel it was that big of a deal. It isn't until it is.

[bosman]

People who possibly might have MS often spend some time catastrophizing about what horrors might occur in their lives somewhere in the future because of MS. But for some reason they don't spend any time catastrophizing about what might happen to them if they slip in the bathtub or get hit by a bus, which has a higher chance of happening and which could happen tomorrow. So it's important to keep things in perspective.

That was ME
However I believe it is first reaction to a unknown but heard condition.

[jreagan70]

That was ME
However I believe it is first reaction to a unknown but heard condition.

Catastrophizing isn't referring to the first reaction of shock and realization. It's the ongoing choice to predict and repetitively dwell on only the worst possible outcome of a situation, often selecting only one of numerous choices of equal possible worst outcome, which is obsessive and irrational.

Bosman, it sounds like you had the normal first reaction of shock and realization, and then you got past it, which is what mentally healthy people do.

Catastrophizing is never healthy.

[jreagan70]

That was ME
However I believe it is first reaction to a unknown but heard condition.

Catastrophizing isn't referring to the first reaction of shock and realization. It's the ongoing choice to predict and repetitively dwell on only the worst possible outcome of a situation, often selecting only one of numerous choices of equal possible worst outcome, which is obsessive and irrational.

Bosman, it sounds like you had the normal first reaction of shock and realization, and then you got past it, which is what mentally healthy people do.

Catastrophizing is never healthy.

[suzie1]

I was diagnosed back in August with CIS after an mri found a lesion on my brain, went through a total panic for a couple of months and found the wait on other tests and results very frustrating, i have the odd blip but nothing bad so have it in my head now just to roll with it, i don't see myself as ill at all and it may have just been a one off (please please let it be) I asked on here if this CIS label was forever or if i could maybe lose it after a certain amount of time with no further problems, sadly i am stuck with it apparently but as long as there are no further problems then that is fine x

[pennstater]

People who possibly might have MS often spend some time catastrophizing about what horrors might occur in their lives somewhere in the future because of MS. But for some reason they don't spend any time catastrophizing about what might happen to them if they slip in the bathtub or get hit by a bus, which has a higher chance of happening and which could happen tomorrow. So it's important to keep things in perspective.

That was one of the conversations my neuro and I had after diagnosis. I could spend my entire life worrying about what may or may not happen with my MS, but it won't help me any. As he said, you drive every day and most vehicle accidents happen in 2 miles of your own house, but you don't spend every day worrying about it. He said life is full of risk, and the better I am able to manage my fear and have healthy risk acceptance level, the better my quality of life would be.

That being said, he did acknowledge what jreagan also pointed out, it is also normal and healthy to grieve following diagnosis and other losses. But aside from that really important to live life as normally as I can.