Newbie Question

[migjh]

This may seem basic to most people on here but I'm gonna give it a shot.

I've been diagnosed with CIS. From what I understand, it doesn't progress to MS until there is a second event. This could be in a few months or a few years or maybe never. Not that I'm excited for it to happen, but how will I know? My optic neuritis was blatant but some of the symptoms I've read about seem like they could be other things.

I'm interested to hear others experiences and learn from them.


Thanks in advance for any help.

[hunterd]

WELCOME TO MS WORLD!
I am primary progressive, but I will tell you about my experiences so far. I have experienced every MS symptom except vision problems, you can find all the symptoms( and descriptions) here, http://www.msworld.org/forum/forumdi...29-MS-Symptoms
good luck!

[MarkLavelle]

I'm pretty sure I'm atypical this way, but I had no symptomatic changes between my CIS dx and the 'upgrade' to RRMS about a year later. The deciding factor was a new set of MRIs that found new lesions.

A friend with MS had ON for her first two attacks, so that's always a possibility, but any new sx that can't be easily explained would be cause to call your neuro...

[jreagan70]

Not that I'm excited for it to happen, but how will I know?

Hi migjh:

There are three possible routes by which you will know.

1. Like ON, you'll have some kind of neurological symptom that is just so unusual, so odd that it really stands out. It could be a new symptom or it could be a noticeable worsening of an existing symptom. If it lasts consistently a minimum of 24 hours, it will meet the criteria of a flare, exacerbation, relapse. At that point, you'll call your neuro and s/he will take it from there.
2. You'll have some kind of symptom that lasts at least 24 hours that you're not really sure about; you'll call your neuro and s/he will take it from there.
3. You'll have no new or worsening symptoms, but you'll have a routine follow-up MRI in 6 to 12 months. If there is a new lesion visible on MRI, it will fulfill the criteria of dissemination (separation) in time and space and become a second episode that could enable a diagnosis of clinically definite MS. Your neuro will discuss the options with you.

In the meantime, it may be really tempting to worry about it every day. The answer to living a happy and productive life is to actually forget about it. Forget about it right up until your next neuro appointment. Live as healthfully and happily as you can. Sing like no one can hear you, dance like no one can see you, and live your life as if CIS never happened. Seriously. Don't waste a moment of your precious life in worry and "what ifs." If another episode happens, it happens and you'll know about it and deal with it. If it doesn't, it doesn't. Your job in life is joy, not worry.

[migjh]

Thanks to all for sharing and for advice.

This is all so new that it occupies a lot of my thoughts. Every day is better though!