Quote:
Originally Posted by Gazelle
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.  |
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 ...
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