Mel & Jamie's ongoing Stanford experience post!

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

Postby Sharon » Mon Jul 13, 2009 2:42 pm

Jamie -

Has Mel had the OCT test? If she needs to see her optician anyway, might I suggest she schedule an OCT test for baseline measurement.
The OCT is being used to measure the shrinking of the brain in MS.

Sharon
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Postby Jamie » Mon Jul 13, 2009 2:43 pm

Sharon, yes she's had several of those during and after HiCy.

She fortunately has no brain atrophy over that period.
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Postby Sharon » Mon Jul 13, 2009 2:56 pm

Good results on the OCT! I also have had no brain atrophy -makes you feel like you have won at least one battle with MS.

Glad to hear that Mel is back to work - she's amazing...doesn't skip a beat does she?
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Postby Jamie » Mon Jul 13, 2009 2:59 pm

No she doesn't!

Also, she's not needed a provigil since after the surgery! That's been keeping her going the last month or so but she's awake without it now.

Long may it continue.

You're right about the atrophy though, its good that they can measure it at least, bad that there's bugger they can do about it though.

Hopefully a combination of HiCy early on and now this should help to keep things at bay, its crazy to think she's only been diagnosed two years and has done Rebif, HiCy + Copaxone and now venous intervention.

Surely that's enough to knock this bastard of a disease down.

Hopefully.
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Postby Jamie » Tue Jul 14, 2009 5:49 pm

Feeling good today.

Pain has subsided a lot so has stiffness, that meant she got a good nights sleep last night for the first time in a while.

Full day at work today and very alert now.

Left sided pain and tingling still absent.
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Postby peekaboo » Tue Jul 14, 2009 5:56 pm

WOW
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Postby Jamie » Tue Jul 14, 2009 6:43 pm

Also she is HUNGRY.

I mean she'd eat but with no real hunger/joy in it.

New contacts today and stlll blurry vision...

Emailed Dr. Drake today to see if she should wait until things settle down or see the neuro-opthamologist.
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Postby mrhodes40 » Tue Jul 14, 2009 7:29 pm

hungry



A psychologist might want to weigh inon that ie depressions may have dampened her zest before...

NOT ME! man, this is physiological. She'll feel great....

wishing you more and better......

ps: me too on med changes. Don't need as much
I'm not offering medical advice, I am just a patient too! Talk to your doctor about what is best for you...
http://www.thisisms.com/ftopic-7318-0.html This is my regimen thread
http://www.ccsvibook.com Read my book published by McFarland Health topics
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Postby CureOrBust » Wed Jul 15, 2009 2:32 am

Jamie wrote:Also she is HUNGRY.
I mean she'd eat but with no real hunger/joy in it.
I can't put my finger on it, but I do not enjoy eating as much as I have in the past. I personally think a lesion has numbed my taste buds slightly, but that's pure speculation.
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Postby LR1234 » Wed Jul 15, 2009 4:35 am

I have lost my taste buds...happened when my tongue lost sensation
Everything tastes bland to me now:(......still love food though!!!

Do you think that Mel's eyes are blurred because the pressure change has altered her eyesight?

Has she always had visual problems and had to wear glasses?

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Postby chrishasms » Wed Jul 15, 2009 8:23 am

123
Last edited by chrishasms on Sat Dec 05, 2009 6:50 pm, edited 1 time in total.
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Postby Jamie » Wed Jul 15, 2009 8:35 am

Leanne,

Yes she's always had poor eyesight, most of her family do.

I'm thinking a pressure change is the difference for sure.

Cheers,

Jamie
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Postby Jamie » Wed Jul 15, 2009 6:47 pm

Feeling good today.

Stopped the advil even, energetic and wide awake!
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Postby Loobie » Wed Jul 15, 2009 8:20 pm

Man I love reading these kinds of things as I am still in recovery mode and can't hardly wait to see if I feel better. I'm glad she's continuing to do well.
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Postby Jamie » Sat Jul 18, 2009 9:41 am

Saturday morning, Mel is up at 9:30.

Full week at work and went to bed last night at 11 with no nap.

Awesome.

I'm not is such good form, heavy session yesterday and I'm in trouble today :(
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