Mel & Jamie's ongoing Stanford experience post!

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

Postby cheerleader » Sat Jul 18, 2009 8:44 am

Jamie wrote: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 :(


Ha! I'm the more tired one in the family now, too, Jamie! I call Jeff the energizer bunny. He's making up for lost years. Give Mel a hug for us, and YOU take a nap today :)
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
User avatar
cheerleader
Family Elder
 
Posts: 5092
Joined: Mon Sep 10, 2007 2:00 pm
Location: southern California

Advertisement

Postby Jamie » Sat Jul 18, 2009 8:50 am

Also, and this is HUGE.

Yesterday I got a major blow out on my tyre, I have a Range Rover so its really hard to change on your own, the wheel weighs like 60lbs!

Mel came to where I was in 100 degree heat, and because I'm a girly man it really ended up me helping her.

We got the wheel on and got home and it hit me, she never in a million years would have been able to do that last month.

She didn't get any double vision or fatigue and is bright as a button today.

Something like that would have knocked her out for two days BD*.





*Before Dake.
User avatar
Jamie
Family Elder
 
Posts: 596
Joined: Mon Jan 07, 2008 3:00 pm

Postby Loobie » Sat Jul 18, 2009 8:54 am

Jamie wrote:*Before Dake.


That's one for the books right there :lol: :lol:
User avatar
Loobie
Family Elder
 
Posts: 2196
Joined: Mon Sep 11, 2006 2:00 pm
Location: Dayton, Ohio USA

Postby Jamie » Sat Jul 18, 2009 9:02 am

I was hoping it would catch on!

:)
User avatar
Jamie
Family Elder
 
Posts: 596
Joined: Mon Jan 07, 2008 3:00 pm

Postby peekaboo » Sat Jul 18, 2009 9:12 am

Well in a weird way, it was a good thing getting the flat tire...It was a good test for Mel and proof of recovery. I hope this is just the begging fro her. :D
User avatar
peekaboo
Family Elder
 
Posts: 623
Joined: Sun Feb 08, 2009 3:00 pm
Location: Arizona

Postby mrhodes40 » Sat Jul 18, 2009 10:55 am

Jamie I so love to read your thoughtful posts with such great events being detailed . Changing a tire in the heat is an amazing, really amazing thing.

I am so happy for both of you!! keep the good posts coming I love to read them.
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
User avatar
mrhodes40
Family Elder
 
Posts: 2066
Joined: Thu Sep 23, 2004 2:00 pm
Location: USA

Postby LR1234 » Sat Jul 18, 2009 10:58 am

Once I have had my stents/balloon angioplasty done (I will def get it done somewhere before the year is out) .

If it doesn't stop the progression it is good to know that Mel has had some success with Revimmune as well. It just makes you feel better to know there are options out there.
LR1234
Family Elder
 
Posts: 1507
Joined: Wed Feb 11, 2009 3:00 pm
Location: California

Postby Jamie » Tue Jul 21, 2009 6:37 am

Absolutely.

Update:

Still doing great, went on the treadmill for 30 mins last night for the first time in years.

Fatigue, brain fog, depression all completely gone.

Long may it continue.

Spasticity on left side gone, left side tingling gone, left eye back to normal vision.
User avatar
Jamie
Family Elder
 
Posts: 596
Joined: Mon Jan 07, 2008 3:00 pm

Postby peekaboo » Tue Jul 21, 2009 6:43 am

WOW very encouraging
User avatar
peekaboo
Family Elder
 
Posts: 623
Joined: Sun Feb 08, 2009 3:00 pm
Location: Arizona

Postby Jamie » Wed Jul 22, 2009 3:38 pm

Mel's on the treadmill again after getting to work at 7am.......

Let me know if these giddy updates are annoying people and I'll desist.

(Or at least do it via PM!)
User avatar
Jamie
Family Elder
 
Posts: 596
Joined: Mon Jan 07, 2008 3:00 pm

Postby Rokkit » Wed Jul 22, 2009 5:33 pm

Please do not desist. :)

Rokkit
Rokkit
Family Elder
 
Posts: 669
Joined: Tue May 19, 2009 2:00 pm

Postby LR1234 » Thu Jul 23, 2009 1:41 am

carry on! (The good news and the bad, but thankfully it seems all good!!)
LR1234
Family Elder
 
Posts: 1507
Joined: Wed Feb 11, 2009 3:00 pm
Location: California

Postby mrhodes40 » Thu Jul 23, 2009 9:31 am

30 mins last night for the first time in years.


if I remember right, Mel had hicy last year just about a year ago, so this means that she did not have this response after that treatment?

Please post what you see and especially things like this that are measurable. I think we can all agree that something like this is very unlikely to be any kind of "placebo", particularly when a significant procedure was done just last year without this same effect.

really encouraging!
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
User avatar
mrhodes40
Family Elder
 
Posts: 2066
Joined: Thu Sep 23, 2004 2:00 pm
Location: USA

Postby cheerleader » Thu Jul 23, 2009 9:59 am

I also think it's important to note the Mel had complete immune ablation with Revimmune....and yet she still had major issues with her jugulars: her left had an equal size collateral and her right was occluded. We are seeing venous abnormalities in folks that have been on interferons, tysabri, copaxone, etc. It's across the board, and immune modulating/ablating treatments do not affect whether or not someone has CCSVI.

Keep posting, Jamie. We love it (maybe get Mel to come on and say hi) and don't forget to sign in the CCSVI patient's log if you haven't yet.
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
User avatar
cheerleader
Family Elder
 
Posts: 5092
Joined: Mon Sep 10, 2007 2:00 pm
Location: southern California

Postby MaggieMae » Thu Jul 23, 2009 11:20 am

Need to find this answer quickly and I tried to use the search but wasn't having much success. I'm trying to reschedule my husband's MRV and the hospital just said they have never done an MRV of the neck. Should that be with or without contrast?
User avatar
MaggieMae
Family Elder
 
Posts: 380
Joined: Wed May 23, 2007 2:00 pm
Location: Pennsylvania

PreviousNext

Return to Chronic Cerebrospinal Venous Insufficiency (CCSVI)

 


  • Related topics
    Replies
    Views
    Last post

Who is online

Users browsing this forum: No registered users


Contact us | Terms of Service