If I can feel it and it still crosses..Well..You know. Best of luck, Gaz..Like it's been said, 3rd time's the charm!

Have fun....I'll trade ya! I know this really good neuro on the West Coast...but Oh! Never mind...

Well, I hope neuro #3 has a brain and knows how to use it. You also know there is a neuro here in da Burgh you could come see, but his schedule is ridiculous. The neuro in Texas might be easier to get into!

I didn't mean to come across as questioning you, Gazelle . . . I was just offering a definition to help explain dissemination in time and space, specific to your situation. It is a hard concept to explain, so if what I'm saying doesn't make sense, please feel free to question it.

So .... the "TM" attack could have been caused by many things (Lyme, infection, GB, MS, idiopathic, etc.), and what they've been waiting for is either a second event (similar but different to the first) which would verify dissemination in "time". They also want it to occur in to different neurological area, which would give them dissemination in "space". That alone could get you a dx, with or without MRI verification.



That table is kinda confusing, when not in context of the entire article, but what it is saying is that you need 2 attacks + 2 "clinical" lesions (two different neurological areas affected, even if the lesion isn't noticable on the MRI). If you don't have that, then you move down to the next level of required evidence (on the table above).

However, if there isn't another clear attack that occurs, they will use the first attack as evidence of "one", then rely solely on the MRI results to eventually give them the evidence of dissemination in time and space. The criteria is much higher when relying on the MRI (and not a clear attack).

For proof of dissemination in space, they want to see a set combination of lesions apparent on the MRI:



As far as whether you had a second attack, they will need to see objective evidence of that before they would disregard the lack of sufficient (according to the above "space" table) MRI results.

For dissemination in time (and with no obvious "clinical" attacks), they have set criteria too:



Soooo.... you need to go to the neuro when you are in an attack!!

Even then, based on your most recent attack, they could explain at least some it it by residual damage from the TM attack. For instance, the spasm is from spasticity, and LONG after a TM attack we will develop these kind of symptoms intermittently, but it doesn't mean we are necessarily in an "attack".

Some of the other symptoms at the same time could have indicated an attack . . . but chances are they would then be looking for changes on the MRI to validate those symptoms (to render them objective "clinical" findings).

Often the inflammation that is going on in an attack will clear up on a MRI within 30 days, so you need to get a MRI of these transitory lesions when the attack is happening. There can be permanent lesions that are there after the attack, but not necessarily either. If you go to a new neuro, and he does another MRI to see if there are more lesions since the last MRI (due to the attack you just had), then you have a pretty good leg to stand on. If nothing has changed, you may stay in limbo for now.

Personally, I would wait until the next event, then insist on a MRI at the time. That is the most likely timing for them to:

1. See the new/inflammed/transitory lesions.
2. Be able to verify objectively that you are in (at least) a second attack.

There is a possibility that things have changed already, so neuro number 3 can potentially dx you now . . . but if there isn't, I just think this would be a very discouraging endeavour at this point in time. I would wait for the next event, just to be sure that number 3 is going to "see" and "listen". JMHO.

Cherie

* Let me know if the dx criteria isn't perfectly clear because I am having a hard time explaining it ...

I didn't take you questioning me--truly, Cherie. I'm understanding you. And I do think that I fit into the criteria, which is why I was dx'd by the MS specialist in 2005. He said I met the criteria when I questioned him specifically about it. We discussed the criteria and my situation.

Then I go to this new facility this year because my MS Specialist got recruited to work with MS patients at the Cleveland Clinic. At the new facility, Dr. Researcher says, "oh, no spasticity ever. No lesions on 2005 MRI (brain). You never had any additional attacks. TM and that's it. 2 lesions 2007 brain MRI but probably artifact (and wouldn't you know they're in the corpus callosum too)." The 2005 MS Specialist and his partner Dr. Flip Flop both said "spasticity" and Dr. MS Specialist said MS and lesions on 2005 MRI (brain). Dr. Recruited said, "Yep, one lesion on 2005 MRI and clinically isolated syndrome." He never mentioned spasticity or 2007 MRI.

SOOOoo....... this is ridiculous. It's boiling down to the opinion of the day. And I'm getting sick of it. It's like getting the soup du jour.

If I met the criteria in 2005 for a dx, what the heck happened for me not to meet it 3 years later? The criteria didn't change.

My 2005 MS Specialist wasn't one to dole out IVSM at the drop of the hat. And one reason I can't remember now is because it was a horrible time when I had my attack in 2005. My grandmother, to whom I was very close, had just died; my best friend was deploying to Iraq; and I was having a major problem at my job with my partner in our business. I ended up having an attack about a month after my grandmother's funeral in the middle of trying to sort through a dysfunctional family situation related to her death, my partnership deterioriating, and my brain's mush. I remember that I reacted badly to the roids--very fatigued and anorexic during it. That's about it.

No one ever asked me or suggested an MRI during the attacks. I'd had MRIs very shortly before both rounds of IVSM if I recall correctly. So they didn't want to repeat them.

I'm just going to take a deep breath and go in there tomorrow and see what this doc has to say. But I'm NOT going to be really excited if he comes up with yet another theory or wants more testing. I've given enough blood to start a new person and gone through enough testing in the past year to keep at least one doc's personal bills paid for months. Nothing's shown up that explains anything else as contributing to my sx. Fibro has been ruled out, Sjogren's has been ruled out, neurosyphillis, Lyme, RA, etc. All have been ruled out. Vit. B deficit's been ruled out etc. Psych issues have been ruled out. I've been diagnosed with "Adjustment disorder." (Ya think? You live with this disease and you're gonna have adjustment disorder. It's a heck of an adjustment on a daily basis. Oh, yeah, and the chiro can't fix adjustment disorder. ) And it seems, too, that every doc has his/her definition of spasticity.

I've done the limbo thing. I'm comfortable with the limbo thing. I'm just ****** that the docs at this facility can't seem to agree from one to the other. At least Dr. Flip Flop, my initial neuro, had the guts to tell me he wasn't comfortable and referred me to his partner MS Specialist neuro. But these guys at this facility are supposed to be on par with the Cleveland Clinic and other places of that level. SOMEONE should agree. None have. There's something intrinsically wrong with that.

That's all.

That's the source of my ire and cynicism.

It took nine years, seven Neuros, tests and more tests not to mention out of pocket expenses.

I finally found one who would pay attention to my symptoms, test results and MRI changes.

Hang in there kid!

I have a friend in a similar situation as you Gazelle. She was dx about 4 yrs ago, after a couple of attacks and a MRI, and was immediately put on one of the CRABs. She wasn’t feeling comfortable with just the one opinion though, so she sought another. While I agree that EVERYONE (dx or not) should get a second opinion, I warned her that based on what she told me about her MRI results, it was possible she could end up losing the dx at that point.

As it was, the second neuro disagreed that it was MS, and he revoked the dx.

If my friend had stayed with the one opinion, she would be on treatment right now. Even though she has had “flares”, her MRI’s have ‘looked so good’ since the initial dx. Her med would likely have been credited with keeping those big bad lesions in line, at least for a few more years . . .

There is probably little doubt that a % of us, especially those who only get one opinion, get a “premature” dx of MS. What I mean by premature is that the person may prove to have MS in the long run, but someone jumped the gun and got lucky with giving the right dx from the get-go.

There are times too though, where people have been using a CRAB and staying stable for 5+ yrs, till eventually a 2nd neuro comes along and says “it’s not MS”. Most times when this happens, it’s because they finally figure out that it was another disease all together . . . and some neuro had jumped the gun in the beginning.

In your case, Dr Flip-flop was flip-flopping for a reason. He must have felt that he didn’t have clear enough evidence of MS at that point, even if he believed it would pan out to be MS in the longer run. Your second neuro agreed there wasn’t enough evidence YET, but that doesn’t mean either believed there wouldn’t be in due time.

At this point, I hope that your MRI has changed, this neuro sees something the others missed, or he is at least prepared to monitor you in the longer run. It is important to find one neuro you trust, and stick with him so he can follow your progress (even if you forget the "details" on attacks, he WILL remember).

Good luck!

Cherie