hi steve
welcome to NT. i don't know the exact answer to your Q. what i could suggest is that you get a copy of the mri on a disc and a copy of the report. just go to the place where you had it done and sign a release. it's your legal right to get your records.

start to accumulate a medical file on yourself. it will come in handy as you travel the road to a dx (diagnosis) or it's ruled out. you also might want to consider getting a 2nd from an MS specialist. you could ask your local MS society for dr names (call 1-800-FIGHT MS) or google some names in your area. you can also google their rating on Healthgrades.com.

start to keep a brief sx (symptom) journal with your sx's and dates.
have you had any vision problems?

it can be a journey to get a dx of MS. it's a process of elimination. i'm wondering on your LP report....did you have any O-bands? a result of 2 or more could lean towards MS. you can google MacDonald Criteria. it's something neuros use to guide a dx to MS. see if you fit.

please stay in touch. you are your own best advocate so don't give up.

Nancy gave good advice above. The key you want to look at is the McDonald Criteria. If you only have a couple of lesions, they typically want to see either new lesions more than 6 months apart from the previous ones, or more than one episode of clinical symptoms separated by time in order to give a diagnosis of MS. I don't know for sure, but I doubt they would give you a dx of progressive MS if you did not meet the RRMS criteria, because it is likely the lack of defined progression (either via new lesions or new symptoms) that is keeping you from getting a RRMS dx at the moment.

Right now, they probably have you Dxed as CIS or clinically isolated syndrome...meaning you have had one episode of symptoms and one set of lesions visible on an MRI to go with it. Until you either see new symptoms, significant progression of you existing symptoms, or new lesions, you are likely to stay stuck in that limbo area. Therefore, if you think there are changes occurring to your symptoms, it is VERY important to record those changes and track when they happen and how long they last in a diary of some sort. Then provide that information when you see your neurologist. That list of symptoms or changes is what they will need to define the change in clinical condition that would form part of the diagnostic criteria.

It is hard to say good luck...because nobody wants to hope for an MS dx...but I hope you get some resolution and clarity for whatever it is that is causing your symptoms!

Hi kell.steve@bigpond,

I'm not understanding something, I guess. You mention having "multiple lesions on the brain" as shown on an MRI and yet there is no MS dx. These were some other kinds of lesions, or they weren't clearly MS-type lesions?

Usually if there are multiple lesions on the brain and they're in the locations favored by MS and look like MS lesions, the neurologist will give at least a tentative MS dx. Maybe the clinical exam didn't show any signs even though you'd been having symptoms? Even then you'd probably be tentatively diagnosed with MS.

As TxBatman said, you may be classified as CIS for clinically isolated syndrome. It would be useful if you could get a copy of the doctor's notes on your office visits and any reports about the MRI. If you're listed as CIS, many doctors now will start prescribing one of the MS disease-modifying drugs because it's been shown that these are most effective if started early.

You might not want to worry about whether it's PPMS or RRMS just now. You may have heard that PPMS is a "worse" form but actually many people with PPMS live out a normal life span and aren't so severely afflicted as you might think while those with RRMS have to wonder when the next relapse is coming their way and how bad it will be.

These categories (RRMS, PPMS, SPMS) are a bit fuzzy anyway. The experts aren't always sure which category you're in.