Yep. After Dr. Researcher and Dr. I've Been Recruited by Another Facility, I'm going to see Dr. Unknown on Wednesday. And I'm not excited.

Dr. Researcher said "oh, transverse myelitis only and I'm a consult only."
Dr. Recruited said, "transverse myelitis and clinically isolated syndrome can't be your neuro because I've been recruited."

I'm fully expecting Dr. Unknown, allegedly my "treating neuro," to say that I have a hangnail and there's nothing wrong with me. With expectations that are low, I'm sure to not be disappointed!

Dr. Recruited listened to me when I said it wasn't a typical TM presentation but he didn't pay attention to the fact that I had a thoracic spine lesion in 2003 and no brain lesions, but ended up with two brain lesions in 2005. (Dr. Recruited only saw one, however, even though my MS specialist neuro in 2005 saw 2.)

So I'm going to ask Dr. Unknown about how it's clinically isolated syndrome when you have lesions disseminated in time and space (with attacks disseminated in time and space) too. Cuz I need that explained to me. Anyone ever hear of McDonald criteria, doc?????? <that's sarcasm and rhetorical cuz I know what they are>

And my neuropsych testing showed that I have cognitive deficits--those I complained of--but the neuropsych said that most people probably wouldn't notice them (still). <sigh> If only *I* didn't notice them. He also told me that he didn't have any good compensation strategies for me for the particular cognitive issues I had, which was ok.

So wish me luck for Wednesday. If Dr. Unknown says it's a hangnail and there's nothing wrong with me, then I think that I'm done with the docs at that facility. A friend of mine has already told me that if I end up with a third opinion that's other than I've gotten from 2005 on to come to Texas and see her neuro. I might just do that if that happens!

Well, tell us how you really feel Gazelle! LOL j/k

Let's hope that the 3rd "dr" is a charm. I say some prayers that things work out well for you on Wednesday.

Good luck Gaztastic. You should wear a cape, carry a staff and pretend to 'float' into your neuro's office. Catch him completely off guard. Maybe then he'll take you seriously.

My colleague and I have come to the conclusion that the more eccentric you are here, the better the relationship you'll have with your neurologist. Perhaps that will work there as well?

If you had two "clinical" attacks, objectively observed, that's dissemination in "time".

Dissemination in "space" means that the attacks clearly happened because of two seperate neurological causes (lesions), and the attacks identified where those lesion would be found (basically).

So, I had one attack where I was numb from the chest down, and another where I was numb from the top of my head down. With spinal lesions, they KNOW that those attacks came from different lesions within my spine, and the MRI confirmed that.

If you had eg. one event with ON, then one of TM . . . or one of TM and another with facial numbness, then you would have dissemination in "space".

Have you had two "clinically observed" attacks that affected two seperate neurological areas?

Cherie

Hi Gazelle,

I am having a "Cog fog" day here and cannot follow what you wrote, sorry.......

I DO want to wish you luck with doc #3, you will be in my prayers also.


Joe

Dimpled One, don't know if I can find a cape before Wednesday but I'll look. That's too funny. I think the place I'm going to has a great psych ward so maybe I shouldn't push it.

Cherie, I had sx all over my body with the first attack in 2003 and the neurologist I was seeing at the time said that there weren't any lesions on the brain so he couldn't explain sx above the level of the thoracic lesion. He did say that there could be sub MRI level lesions which could cause sx. As far as the other two attacks that I had where I had IVSM, I don't truly remember if I had other sx above the level of the thoracic spine lesion that may have been different than what I experienced the first attack. I just don't remember. I remember having nystagmus, tremor in my hands, and a major increase in cognitive problems with the episodes in 2005 and 2006.

I can say that just recently I had a flare (in the middle of the whole back spasm episode that lasted over a month) where the right side of my face and half my tongue felt numb. That was new. It lasted a few days but other sx lasted longer than that. Didn't see a neuro, however, because I'm "between" docs. Didn't see any other doc either, just told the PT guy about it. Then I told the physiatrist about it when I went back for my follow up visit with him.

Part of the problem is that I was so disgusted with the whole Dr. Flip Flop neuro thing that I didn't call my neuro to report new sx because it didn't matter anyway. They didn't really care. I tried doing it and nothing ever came of it--not even a follow up call about the sx. And I wasn't a whiney type. I would call after things had been going on for about a week, not just one or two days. Tried that 2-3 times and then stopped. So I didn't bother after 2003 and Dr. Flip Flop.

What really had torqued me up and fed my "why bother calling or reporting stuff" attitude was when a PA saw me in 2003--a day I'd gotten out of bed and landed on the floor because my legs wouldn't hold me up and when I couldn't count or remember the names of the months between December and April--and said, "If you were dx'd we'd give you steroids. But you're not dx'd." Ok.... that attitude says we could help you but no matter what you say without the dx it doesn't matter--suffer Bee-otch.

((((((Gazzy)))))) Good luck with Doctor 111 let's hope he's charmed or at least charming..

I can't wait to hear what he says. Oh and try not to wear that wonderful sarcasm of yours, on your forehead..lol

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!