Sorry you are feeling rotten, Keri, and I wasn’t meaning to make you feel worse.

My response was really meant to speak in detail to Rissa’s original question about “dissemination in time and space”, but also in response to your comment:

From that article I posted, that neuro DOES rely on dissemination in time and space, he just summed that up by calling it “history”. He said he (sometimes?) ALSO includes the LP, EVP and MRI results, as "99% of the time they line up for a dx".

Certainly not all of those tests are required for everyone though . . . JUST dissemination in time and space. Those are mandatory.

This is the point I am trying to make ~ that in fact they ALL rely on dissemination in time and space for the dx. I'm going to try to apply Rissa’s (and your) case to the criteria I posted, to try to explain how they are dependant on this . . .

Rissa seems to have lots of MS-looking lesions (“dissemination in space”). However, she had only one clinical attack, so there was no evidence of “dissemination in time”. They could have sent her away for a while, OR called it Clinically Isolated Syndrome (CIS) and treated her at that point . . . which is what he did.

What is still required for an official dx though, is evidence of dissemination in “time”.

According to the table, when someone presents with only one clinical attack and 2+ lesions, what they will eventually need to show is “dissemination in time", either “demonstrated by MRI" OR "another clinical attack”. Rissa has not had another clinical attack yet, so her neuro would be reliant on changes to her MRI results:



The table below, “MRI Criteria for MS, Dissemination in Time”, provides a guideline on what they look for in the MRI results (if there isn’t another clinical attack):



When no further attacks occurred for Rissa, they did another MRI to see if there had been any changes. Her MRI’s hadn’t changed, so at that point he would have to revisit his original dx.

This is ultimately how they do it for EVERYONE, it’s just that each of us presents with different initial evidence of this disease, and they go from there.

In your case you had one attack, and tons of lesions too. Your attack and lesions must have been “classic” for MS . . . BUT officially he would still need dissemination in time to be absolutely sure of the dx.

Based on your results, he would have dx you with CIS (unbeknownst to you), and in your case, he chose to be extremely aggressive in treating it from the get-go. This is rare (I think I mentioned that to you when you first came on the forum...), but he must have been fairly CONVINCED of the dx (even though you didn’t have dissemination in time), based on his personal experience.

In very short order, you proved to have dissemination in time by showing more symptoms/having another attack, and/or changes to your MRI, etc.), at which point would have officially firmed up the dx.

Rissa still needs to show ‘some’ sort of change to get the “time” factor.

The MRI, LP, EVP, etc. are only TOOLS to help in the dx, in cases where the MS is not blatantly obvious very quickly. Some doctors rely on these tools to help speed the dx process, but if all of us were willing to wait till the MonSter was undeniable (based simply on “time” and “space”), then the “tools” are not necessary for the dx. (That’s what I did, and it took 12 yrs ...). Dissemination of time and space IS necessary though.

Cherie

Keri,
I'm sorry you're having a rough time of it. I hope you feel better soon!
Take Care,
Carisa

Thank you Cherie. This is exactly what I was struggling to get across - you are much more eloquant than I.
To sum up my history:
March/April 2008 - SX: tingling fingers, ocular migranes. Went to first neuro. Had brain MRI w/ and w/o contrast. Came back with 30+ lesions, many of which had MS characteristics. Doc said I likely had MS, but needed more tests to confirm. Unfortunately at this time, I had to change docs bc my insurance changed. Saw someone new, he sent me for a spine MRI (w/ and w/o contrast) and a LP. Both turned up clear. Lots of blood work too - all clear. He put me on Avonex at that time. Let me note that this doctor and his office were very, very unprofessional. There were lots of reasons for me to move my case to the area's MS specialist, other than simply wanting expert care of course.
July 2008: Finally got in to see Dr. Edward Fox (specialist). He looked at all my records and did an full history and neuro exam. He also sent me in for an EVP, which came back clear. At this point, he thought that it would be best for me to get off the DMDs to see if we could see any progression and get a definitive diagnosis. I took my last shot in July.
August 2008 -New brain and spine MRI - no progression. Dr. Fox is monitoring me to see if I have any new symptoms or lesions on my next MRI, scheduled in March 2009.
January 2009 - SX: odd lightheaded, dizzy feelings in split second doses. These may not even be MS related, but I'm making an apointment just in case. He may want to move my MRI up.
Thank you all so much for your concern. I really appreciate everyone so much!

Glad it made sense to your situation. (I always have a terrible time trying to put that in words ... no wonder we are so confused though, eh?!! )

I think you should have that lightheadness checked out, no matter what it turns out to be. That is not "normal", so something is up . . .

At least we know it's not age-related, you are young.

Good luck!

Cherie