[Gazelle]

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!

[tkrik]

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.

[dmplaura]

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?

[lady_express_44]

Originally Posted by Gazelle

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.

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

[JoeMac]

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

Originally Posted by Gazelle

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!

[Gazelle]

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.

[SallyC]

((((((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

[CayoKay]

oh, I get it, Gaz.

I *used* to be so smart... I can feel my cranial capacity slipping away even as I type...



the first clue was... everyone around me started seeming brighter.



fair warning... I had a neuro once who clearly didn't appreciate me doing research, and indicated that he felt I was a hypochondriac, and only researching the symptoms so I'd somehow hysterically manifest them.

:sigh:

"Paging Dr. Fraud! White courtesy phone! Pardon me, that's Dr. FREUD, please pick up the nearest courtesy phone."

so, with the next neuro, I played totally *dumb* and simply described the symptoms, without using clinical terminology or medical jargon.

and hey, whaddaya know? I got my Dx !!

third time's a charm, as they always say!

[Desinie]

Just wanted to wish you good luck,Gaz. I clearly remember how frustrating it can be. Let's hope #3 neuro's the charm!

[doydie]

Good luck. I'm sure this has already been taken care of but make sure you have all your records and hopefully a diary of all events. Get copies of any xrays/MRIS.