I am a little baffled that your neuro labeled you CIS which is considered a one time event which could progress to MS. When you have a new lesion every year and had an enhancing lesion last year that is not clinically isolated. You, my dear, are definitely beyond CIS. You went beyond CIS the very first time you got a new lesion.

Other than that, I think the MRI thing is up to you, your insurance, and your neuro. I don't mind MRI's, my insurance doesn't mind paying for them and my neuro likes them once a year, so that is what I do. If they were costing me money out of pocket or if they bothered me, I would reconsider the value of a yearly MRI.

I guess what I'm saying is do what you feel is best for your situation. If a new MRI could get your neuro off the fence and get you a firm dx, then go for it!

Holly - I love the way you tell it as it is!

I was diagnosed with ADEM, which I understand to be a similar diagnosis to that of CIS, and despite having had two "occurrences" involving different symptoms, spaced by a year and brain lesions.

May be doctors think their patients would not be able to handle a firm diagnosis of MS. As far as I am concerned this is a misapprehension. It would be much better to have a diagnoses of MS than one that is clearly incorrect!

Merle

Discouraged? Yes. Feeling hopeless . Yes, it's true, nothing helps PPMS. There's no ON, no Transverse Myelitis, really no pain (except a leg spasm on my bad leg and this sciatica from being in a chair all my waking moments, a cushion on order (and aren't the prices high for medical help things!!!!)
Had an MRI (guess to prove again I really have MS) 1 1/2 hours into tube, leg started spazzing out, MRI person started yelling out "Hold still, I can't get a picture." I yelled back "I can't control it." They put a strap across my legs to keep me still. As I knew, but knew they wouldn't listen to, I spazzed up and spazz ripped restraint off (luckily just velcroed). This happened twice. Couldn't do enhancing so I returned next week but Health company now dis-allowed enhancing MRI. No, I didn't fight later. Too much effort. My doctor is doing this so he can help me walk (like if I could, I would already) because even faking being able to walk might get me into upcoming Fingolimod for PPMS Clinical trial coming up which is hopeful (if you have hope that is).
So no, I'm not active in trying to get MRI approval for enhanced. As a PPMSer, in 6 years, I've never enhanced, there'e no meds anyway, I can't be in trial and hate time in the noisy tube. Enough already. I have MS already. Leave me alone. I already spend too much time with various advocates, health insurance company prople, sales rep. for wheelchair (can you say "buzzads circling" sensing a dead body ripe to make some money off of? ) I am cranky dnot have health insursanceauthorization (Travel chair I have not meant to be used this much.) I'm done with MRIs and unhelping stuff).

Imaging company has not sent any films to doctor. Excuse me while I go take care of that, and DH wants me to read million page instruction book to re-programable Thermostat ( like like I canfollow instructions anymore. We'll fight about this later, as he's already told kids cold night setting they've complained about my fault. HA! Everything seems to be my fault) (Oh, I'm cranky, cranky, cranky)

I'm PPMS, no meds for me, but new neuro asked for one (It's been years for me, got through first 1 1/2 hours and sciatica and left leg started spzaain oyt and MRT tecgnician Yelled "You're moving, I can[t get a picture".
I yelled "I can't control it"> Twice they put a strap across my legs, twice my leg spazzed and broke it free. Thank goodness it was attached with velcro.

Went back a week later to finish and do enhanced ones. Insurance company now said no Enhanced, had prviously OKed. I had no strength to fight this battle ad really don't desire to spend more time shooting the tube. Why? I can tell doctor, yes I still have MS, since Jan. I'm in a chair. It's November, now I sometimes get thrown out. I can no longer get up, must depend on others to get me up. (Yesterday in this old house, going from Family Room to Front hall meant gong over wooden saddle, one room floor to next, different floor heights, higher to lower, catapulted out of chair at angle drop, flew to floor. Luckily DS home and heard me. We're talking less 1 1/2 inch drop. And luckily to now, I've been an excellent faller.

Thats a great question...I was married to the Olhipie in 2001 and I think his first MRI was at least four years later and I have no idea how long befor that was his last one...

Update:

Neuro said no more MRI's unless I want one. He said it is not medically necessary which I am sure Medicare and Aetna would agree.

He said the best he can do at this time is offer meds for symptoms (not just yet thanks) and he is sending me information on PPMS.

Guess that is a diagnosis?

Usually every 3 years, but only 2 since last one, might start Tysabri next year (save $2500). Like the new machines, large donut instead of tube and much quieter. Easier to almost fall asleep.

You'll be visiting the MRI a lot more frequently than every 3 years once you start Tysabri! Good thing you have the same reaction to it that I do (falling asleep).

How often do you have an MRI while on Ty? I'll have been on it a year in April, but I've been having an MRI every year about March. I have 2 insurances, so that helps with the cost.