This Is MS Multiple Sclerosis Community: Knowledge & Support

Welcome to the world's leading forum on Multiple Sclerosis research, support, and knowledge. For over 10 years, This is MS has provided an unbiased community dedicated to Multiple Sclerosis patients, caregivers, and affected loved ones.
It is currently Mon Jun 17, 2013 11:44 pm


All times are UTC - 8 hours [ DST ]




Post new topic Reply to topic  [ 720 posts ]  Go to page Previous  1 ... 42, 43, 44, 45, 46, 47, 48  Next
Author Message
 Post subject: Re: Cece's turn
PostPosted: Sun Oct 02, 2011 7:15 pm 
Offline
Family Member
User avatar

Joined: Sun Jul 25, 2010 3:00 pm
Posts: 45
Location: Toronto, Ontario
Hi, Cece. I'm so happy to read your latest update. Continue to heal. Congratulations. :smile:

Dorothy


Top
 Profile  
 
 Post subject: Re: Cece's turn
PostPosted: Mon Oct 03, 2011 8:51 am 
Offline
Family Elder

Joined: Mon Jan 04, 2010 4:00 pm
Posts: 8549
So much support and well wishes here. Thank you.
I feel a little self-conscious talking about kickboxing here. I mention it because there are profound changes that show themselves when I exercise. (Sweating, balance, endurance, not getting ill from exercise.)

Cheer, from the beginning, how you described his MS resonated with my own. I had the similarities with having relapses brought on by altitude. (Hiking is good, hiking up high is not good.) I hope it lasts for me the way it has lasted for him!


Top
 Profile  
 
 Post subject: Re: Cece's turn
PostPosted: Tue Oct 04, 2011 5:33 pm 
Offline
Family Elder
User avatar

Joined: Mon Dec 21, 2009 4:00 pm
Posts: 375
I hope you continue to improve, enjoy the color-drenched world, and have reason to sing
"Sha la la la la la la la la la la te da "


Top
 Profile  
 
 Post subject: Re: Cece's turn
PostPosted: Tue Oct 04, 2011 5:52 pm 
Offline
Family Elder
User avatar

Joined: Thu Jul 09, 2009 3:00 pm
Posts: 1281
Kickboxing! Wow! You go girl! And don't let anything stop you!


Top
 Profile  
 
 Post subject: Re: Cece's turn
PostPosted: Mon Oct 10, 2011 9:04 am 
Offline
Family Elder

Joined: Mon Jan 04, 2010 4:00 pm
Posts: 8549
Jugular wrote:
I hope you continue to improve, enjoy the color-drenched world, and have reason to sing
"Sha la la la la la la la la la la te da "

kodachrome, don't you know!


Top
 Profile  
 
 Post subject: Re: Cece's turn
PostPosted: Thu Nov 03, 2011 10:52 am 
Offline
Family Elder

Joined: Mon Jan 04, 2010 4:00 pm
Posts: 8549
My left jugular, procedure #1:
Image


Top
 Profile  
 
 Post subject: Re: Cece's turn
PostPosted: Thu Nov 03, 2011 10:53 am 
Offline
Family Elder

Joined: Mon Jan 04, 2010 4:00 pm
Posts: 8549
my left jugular, procedure #2, five months later:
Image
The end result looks equally good both times.
It has lasted without restenosing longer this time. I am still doing really well.
Even before procedure #2, in the first image of the second set, it is a more functional vein than it was before the first procedure.
In that first image of the second set, it could be restenosis due to scarring, but Dr. Sclafani thought it was restenosis due to residual valve material. Or restenosis due to collagen III abnormalities that made the valve less compliant? It's not clotting and it's not intimal hyperplasia. It could be considered natural narrowing before the jugular joins the subclavian but it was seen that the contrast just sat in the vein, in stasis, not going anywhere. And I had improvements upon treatment.


Top
 Profile  
 
 Post subject: Re: Cece's turn
PostPosted: Tue Feb 07, 2012 11:46 am 
Offline
Family Elder

Joined: Mon Jan 04, 2010 4:00 pm
Posts: 8549
I have not updated in a while but everything is still good. Twice I've had a few weeks or a month where colors don't seem as bright (in November and in January, if I'm recalling right) and then, bam, they're back, and I can't walk through a mall or a gym without the colors grabbing my attention and seeming all unnatural. It was especially odd in January to feel like the colors were lessened, because I had improvements at the start of January too. Still improving nearly a year out from the first procedure.

I also have a history of setbacks in the December/January timeframe. No setback this year.


Top
 Profile  
 
 Post subject: Re: Cece's turn
PostPosted: Tue Feb 07, 2012 11:53 am 
Offline
Family Elder
User avatar

Joined: Mon Jul 11, 2011 3:00 pm
Posts: 304
good to hear Cece


Top
 Profile  
 
 Post subject: Re: Cece's turn
PostPosted: Wed May 02, 2012 11:04 am 
Offline
Family Elder

Joined: Mon Jan 04, 2010 4:00 pm
Posts: 8549
This is a seriously long thread!
I wanted to update that I've arranged for an ultrasound check, which will be tomorrow with Dr. Cumming here in Minneapolis.

I've had a number of small symptoms that make me think I should get checked out. A week ago I had some foot drop issues recur for the first time since last May. I had a 100 degree fever, but I've had fevers between then and now and the foot drop didn't recur, so why this time. It's gone away now. I had a week when my left arm was having odd sensations, which I hadn't had since September. It never led to full-blown numbness and it went away. I had eye discomfort again, and man! That led to some curses. I have been taking my eyes for granted. Those are all symptoms that used to come and go, so it's hard to point to them too strongly, except that they had stayed very gone for a long time gone. On the more everyday front, instead of having dim colors all the time (pretreatment) or bright colors all the time (posttreatment) or dim colors all the time (restenosed) or bright colors all the time (after second treatment), I'm having bright colors some days and dim colors some days. Bright colors some weeks and dim colors some weeks. Crazy-making. I'm also finding myself waking up feeling ill some days, and it takes awhile to wear off, and that is familiar.

I'm still much better than I was pre-treatment. Back in January was when the change in colors really became apparent, and back in January was when I got marked improvements in bladder and diaphragm spasms. Those improvements have lasted. The cogfog improvements which came after the second treatment are as good as ever. Many other improvements too.

I am not sure what Dr. Cumming will see on ultrasound tomorrow and I am not sure what I would do depending on what he sees. We'll see what he advises.


Top
 Profile  
 
 Post subject: Re: Cece's turn
PostPosted: Wed May 02, 2012 11:58 am 
Offline
Family Elder
User avatar

Joined: Mon Jul 11, 2011 3:00 pm
Posts: 304
you sound just like my partner.

post treatment there are good days and bad days.

pre treatment there were bad days and worse days (this was for about the last 5 years)

post treatment - she has days where her walking is 100% and others where she can barely stand on her own.

pre-treatment - her walking sucked (her words)



i wish you continued healing Cece


Top
 Profile  
 
 Post subject: Re: Cece's turn
PostPosted: Wed May 02, 2012 3:00 pm 
Offline
Family Elder

Joined: Sat Mar 17, 2012 8:47 pm
Posts: 122
All the best in continued success Cece. You have no idea how valuable reading your posts was to me before making the decision to move forward.

My wife and I were and are grateful.

Tip of the hat, my dear. :) Keep us posted.

tilt

_________________
...and I for one, welcome our new Neurologist overlords!

My before and after CCSVI treatment video http://www.youtube.com/watch?v=RhosV4_DvWw
Visit my Lego Amusement Rides website http://www.brickshelf.com/cgi-bin/gallery.cgi?m=Bolliger


Top
 Profile  
 
 Post subject: Re: Cece's turn
PostPosted: Wed May 02, 2012 3:59 pm 
Offline
Family Elder

Joined: Thu Apr 17, 2008 3:00 pm
Posts: 253
Location: Michigan
Cece, just want to let you know that I continue to follow posts here on TIMS. I don't often post but consider you and Dr Sclafani my mentors/teachers. Do keep us posted and, as always, I wish only the best for you.


Top
 Profile  
 
 Post subject: Re: Cece's turn
PostPosted: Thu May 03, 2012 7:18 am 
Offline
Family Elder
User avatar

Joined: Sat Jun 12, 2010 3:00 pm
Posts: 491
Location: Montreal
best wishes for tomorrow !


Top
 Profile  
 
 Post subject: Re: Cece's turn
PostPosted: Thu May 03, 2012 9:12 am 
Offline
Family Elder
User avatar

Joined: Mon Sep 10, 2007 3:00 pm
Posts: 4695
Location: southern California
Cece--
Sending good thoughts. Don't discount an illness. Jeff thought he had restenosed last week, he had a return of fatigue, dizziness, pain, felt ill....turned out he has shingles. On an anti-viral, resting and feeling much better today. That fever may have been indicative of a flu or viral/bacterial infection. Hope you get some answers from Dr. Cumming, but if flow looks good, remember--not everything is MS/CCSVI-related.

_________________
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS


Top
 Profile  
 
Display posts from previous:  Sort by  
Post new topic Reply to topic  [ 720 posts ]  Go to page Previous  1 ... 42, 43, 44, 45, 46, 47, 48  Next

All times are UTC - 8 hours [ DST ]


Related topics
 Topics   Author   Replies   Views   Last post 
There are no new unread posts for this topic. Happy Anniversary, Cece

HappyPoet

12

431

Sun Jan 06, 2013 1:20 pm

blossom View the latest post

There are no new unread posts for this topic. My Turn!

[ Go to pageGo to page: 1, 2, 3 ]

magoo

35

3627

Sun Oct 18, 2009 12:02 pm

CRHInv View the latest post

There are no new unread posts for this topic. My turn!

Mathd

11

1127

Fri May 06, 2011 6:49 pm

newlywed4ever View the latest post

There are no new unread posts for this topic. Randi's Turn

[ Go to pageGo to page: 1, 2, 3 ]

Arcee

42

4965

Tue Jul 21, 2009 6:27 am

bestadmom View the latest post

There are no new unread posts for this topic. Akaheather's Turn

[ Go to pageGo to page: 1, 2, 3, 4 ]

akaheather

45

5145

Fri Jan 29, 2010 9:45 pm

Cece View the latest post

 


Who is online

Users browsing this forum: No registered users


You cannot post new topics in this forum
You cannot reply to topics in this forum
You cannot edit your posts in this forum
You cannot delete your posts in this forum

Search for:
Jump to:  


News News Site map Site map SitemapIndex SitemapIndex RSS Feed RSS Feed Channel list Channel list
Read hundreds of personal Multiple Sclerosis stories on Experience Project. Experience Project is an anonymous community where people connect through their life experiences, made by the same people who built This is MS. With over 30 million personal stories about every possible life experience, you can quickly find people like you!


Interesting: Secret Confessions | Dream Meanings | Ask Questions, Get Answers

Advertise on the premier multiple sclerosis forum