Loobie's 100 day club thread

A board to discuss Tcelna as a treatment for Multiple Sclerosis

Postby Lars » Wed Jul 09, 2008 11:50 am

Patrick,
When in Peru, do as the Peruvians. A climbing trip, poor language skills, and ordering the "special" led to a big rodent on my plate. They might say it's Guinea Pig but it looked like a rat to me. Maybe it's my personal link to MS.
P.S Yeah I tried it.
You are what you eat.
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Postby Lars » Wed Jul 09, 2008 1:45 pm

Tim,

"I was surprised to read the latest data from my study that 75% of the patients had an epitope shift. Even with that, the overall results were that 73% of patients remained relapse-free at two years. " http://tinyurl.com/6r92z4

I get the sense that this wasn't what you were expecting. Care to elaborate on you overall thoughts at this point?
Lars

I really still haven't figured out the groovy quote box thing!
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Postby Lyon » Wed Jul 09, 2008 1:52 pm

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Postby Lars » Wed Jul 09, 2008 3:30 pm

Bob,
Thanks for the tutorial but don't forget that I am the guy that did the Pasat wrong for a year!
Thanks, Lars
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Postby Lyon » Wed Jul 09, 2008 3:40 pm

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Postby Loobie » Wed Jul 09, 2008 4:25 pm

My key to that test is this, and I don't know that I've ever missed one :wink: . When listening to HAL 9000, close your eyes and lower your head. When he says the number you need to add, remember it right after you say the sum by visualizing one of those countdown things like they used to show at the beginning of TV shows. You know the one with the sweeping 360 degree hand that would count down to broadcast. Just visualize the number you need to remember looking like that. It works for me. I just do that and lather, rinse and repeat.

"The first number will come in 5 seconds"...............
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Postby patrickm » Wed Jul 09, 2008 5:28 pm

I say the sum and then quietly but out loud repeat the digit I'm supposed to be remembering. I've never missed one.'

My neuro is unimpressed though. "A simple memory test" that he says doesn't really tell them too much specific. But it's a standard test so everybody does it.

The ones I got from my neuropsych were much more intense.
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Postby Lyon » Wed Jul 09, 2008 6:54 pm

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Postby Loobie » Thu Jul 10, 2008 3:43 am

Yeah, it should be something that requires more actual 'thinking'. That would be a novel concept for checking cognitive function! Hell, I could have a pretty diminished capacity and still 'ace' that test. It's like I told my neuro. about the 'long walk' portion of the EDSS. Making a gradual decline in function would not even show up on that bad boy until you're unable to walk 500'. It should be obvious that one can still have pretty diminished capacity in their legs but still grunt out a 500'walk. I don't have any answers, I'm just bitchin'.
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Postby patrickm » Thu Jul 10, 2008 6:24 am

My first scary symptom—as I was in adamant, aggressive denial about my memory problems cuz in the back of my mind I was scared I had my dad's Alzheimer's—was disequilibrium. I was being sucked to the right by a big magnet, but though I felt it all the time, it only showed if I walked a decent amount. If you stood on my right and walked around the block with me, I'd probably bump into you 3 or 4 times. Walking across the room in the doctor's office...NADA. My first two doctors visits, they couldn't see anything at all and I began to suspect myself completely insane.

The Tovaxin tests seem to me to only show a very large drop off. My neuro exam though seems to catch the subtler stuff and that's where I've had either my fluctuations in EDSS or it's remained the same but the symptoms that it has found have varied from test to test. And I wish to hell they would keep that metal prod thing off the bottoms of my feet.
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Postby Lyon » Thu Jul 10, 2008 6:26 am

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Postby TWG » Thu Jul 10, 2008 7:15 am

I answer with the total, and under the table I place the last number read on my fingers, give the new total and replace the number on my hands with the last number read. I hate the stupid peg test. They say they will pick the pegs up they fall on the floor. I always threaten to throw them at the wall but never have. It just frustrating because it seems to be such an easy test, but reminds me of the dexterity I've lost.
Diagnosed with MS in Feb. 14 2000! Was a Tovaxin guinea pig.
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Postby patrickm » Thu Jul 10, 2008 7:45 am

I guess they're all easy unless/until you can't do them. : - (
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Postby Lars » Thu Jul 10, 2008 8:30 am

I think the Pasat is over for the extension! By the way, it never bothered me much even though I was doing it wrong. I actually wish we were doing it in the extension so I could prove myself.
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Postby Loobie » Thu Jul 10, 2008 10:40 am

Lars, I've had to do the Pasat at every extension visit.

Pat, I have that same "pulling to the right problem", especially when turning right. About 100% of the time when I'm making a right turn to go around an intersection in the hallway, I basically always wack into the corner with my leading shoulder. It's like I turn too early. My boss told me I need an alignment. It's funny to watch when it's real bad; for others of course :lol: . I'll be walking down a long hallway to get to my office and about every 10 feet I have to push off the wall to put myself straight.
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