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 Fri May 24, 2013 3:49 pm


All times are UTC - 8 hours [ DST ]




Post new topic Reply to topic  [ 9 posts ] 
Author Message
PostPosted: Wed Jun 02, 2010 5:02 am 
Offline
Family Member
User avatar

Joined: Tue Dec 29, 2009 4:00 pm
Posts: 26
Hi all

Yes I am being lazy and just copying and pasting my latest report from my tracking status... I do have a good excuse though as I am at work :D

Just to summarise - I have had a great 11 weeks! :lol:


CCSVI TRACKING

MS HISTORY
Name: Lilaclomax
Male/Female: F
Age: 32
Date & type of neurological diagnosis: RRMS - since 2006
Lesion locations (most affected side, if known), number: Multiple lesions in cerebral hemispheres, lesion in right temporal fossa (potentially unrelated). Changes in L. 1/2 and 3/4 discs.
MS treatments: Avonex
MS symptoms before stenosis intervention: Optic Neuritis (loss of sight in left eye), L'hermittes (electric shocks down my back), Paresthesias (loss of sensation in multiple locations), Myelopathic exacerbation (weakness and inability to walk at times), fatigue, Trigeminal Neuralgia (labour pain in my right hand side of my jaw!), Diplopia (seeing double)... typing these out makes me sounds like a walking medical directory.
Number of relapses before intervention: 8
EDSS before CCSVI intervention (physician-assessed): 3.0
FSS before CCSVI intervention: 5.5
MSIS before CCSVI intervention: 71
Are you using Inclined Bed Therapy I.B.T? Y

Have you had testing (and possibly procedure) for blockage yet: Yes, both testing and Liberation Treatment

STENOSIS PROCEDURE HISTORY

Date/location of testing/procedure: 17th March, Katwice, Poland

Type of venographic study: MRV, Doppler

Diagnosis: Stenosis right and left jugular vein

Type of procedure: Percutaneous nalloon angioplasty right and left jugular vein (Cordis 14 x 40mm)

Procedure/drug related symptoms: Procedure took around 45 mins and was painless, Fraxiparine prescribed for 7 days. No pain after procedure, some aching in neck where ballooning took place.


Number of relapses since first CCSVI intervention: 0
Impact on your MS symptoms in words (include date in brackets if there have been multiple updates): (18/3/2010) To date feeling of warmth all over although this could be related to the IV from surgery. The fatigue has dissapeared and my double vision takes longer to appear.

(1/5/2010) Wow - has it been this long! The fatigue is non-exsistant, the double vision is always in the background but doen't make an appearance unless I have had a long day at work and even then it clears up after a couple of hours of relaxing.
I have had no other symptons and the feeling has returned in the thumb and first two fingers on my left hand. My ring finger and little finger still have a 'tingling' feeling but at least I can now feel what I am picking up.
I am still not taking any DMDs or other medication.

(2/6/2010) I have to hold my hands up... I have not been on this forum for a few weeks now, is this what happens when you get most of your life back? I am now back at work full time which for me says it all really, I have not noticed any new symptons and my fatigue has completely gone. My hands and legs work without any problems and even though I have not regained all the feeling in my ring and little finger on my left hand I have complete use of my hand.
The double vision is still an issue if I am hot or have done lots of exercise but (and this is the best part) it goes away by itself within half an hour of inactivity.
CCSVI - has it worked for me? So far so good, I know that I am only approaching the 3 month mark, yet just having 3 months of not even thinking about MS was worth the treatment... I just hope that I remain stable xx


Top
 Profile  
 
 Post subject:
PostPosted: Wed Jun 02, 2010 5:15 am 
Offline
Family Elder
User avatar

Joined: Mon Mar 01, 2010 4:00 pm
Posts: 336
Location: Chicagoland
Lila, thank you for posting your incredible results and progress!

God bless you, and I hope to join the Liberated ranks soon!

_________________
Three veins angioplastied.  One renewed life.  


Top
 Profile  
 
 Post subject:
PostPosted: Wed Jun 02, 2010 5:39 am 
Offline
Family Member
User avatar

Joined: Sun Apr 18, 2010 3:00 pm
Posts: 37
Hooray - it is great to hear about your success!


Top
 Profile  
 
 Post subject:
PostPosted: Wed Jun 02, 2010 6:39 am 
Offline
Family Elder
User avatar

Joined: Thu Mar 25, 2010 4:00 pm
Posts: 160
Happy for you :-)
There is no doubt in my mind that liberation works. I've experienced it. Just like you :-)
But had a couple of days now, where symptoms are coming back, and not clearing after rest. But now I know that it works, and if they can get the lasting results with the operation, more stents or more angio I know that it will be good again. And its good to know that the down will not last longer then the next procedure, that its not going to be like this for rest of my life.
Enjoy your new/old life :-)

_________________
<div>I have lived with ms for 8 years. The last year has been hell, I've gone from shite to even worse every single month, until my liberation in May. </div>


Top
 Profile  
 
 Post subject:
PostPosted: Wed Jun 02, 2010 11:51 am 
Offline
Family Elder
User avatar

Joined: Sun Jan 31, 2010 4:00 pm
Posts: 329
lilaclomax, boy am I happy for you. Now, every day must feel like a celebration of life. I'm off to Poland on June 26th. Your story gives me, and all of us I guess, something to look forward to. Thank you.


Top
 Profile  
 
 Post subject:
PostPosted: Wed Jun 02, 2010 11:56 am 
Offline
Family Elder
User avatar

Joined: Thu Jan 14, 2010 4:00 pm
Posts: 481
Location: Italy
Lilaclomax that's wonderful news! Thanks for posting! And keep us updated on the next 3 months :D


Top
 Profile  
 
 Post subject:
PostPosted: Wed Jun 02, 2010 1:41 pm 
Offline
Family Elder
User avatar

Joined: Thu Dec 10, 2009 4:00 pm
Posts: 156
Location: London, UK
hi Lilaclomax,

this is brilliant news! many thanks for the update

cola


Top
 Profile  
 
 Post subject: :
PostPosted: Fri Jun 04, 2010 12:07 am 
Offline
Family Elder
User avatar

Joined: Mon Dec 14, 2009 4:00 pm
Posts: 128
Location: Glasgow, Scotland
That is great news and I hope you continue feeling good.

I was in Katowice 23/24th March, so just after you. I have had improvements but I still get fatigue while walking. Hopefully that will be gone soon.

I am also not on any medication apart from Aspirin and Arreplex that they prescribed in Poland.

A;; the best on your continued improvemets. :D

_________________
<em>Badger
RRMS 2004</em>
Appt Katowice 23/24th March


Top
 Profile  
 
 Post subject:
PostPosted: Fri Jun 04, 2010 1:33 am 
Offline
Family Member
User avatar

Joined: Mon Jan 18, 2010 4:00 pm
Posts: 50
Very happy for you, and thank you so much for some much needed good news!

I'm going to Katowice on Monday and was starting to crap myself after hearing all these doom and gloom posts!

Wishing you all the best for the future.


Top
 Profile  
 
Display posts from previous:  Sort by  
Post new topic Reply to topic  [ 9 posts ] 

All times are UTC - 8 hours [ DST ]


Related topics
 Topics   Author   Replies   Views   Last post 
There are no new unread posts for this topic. Five Month Update

Jamie

14

2224

Thu Nov 05, 2009 10:31 pm

catfreak View the latest post

There are no new unread posts for this topic. Mel's 10 month update

[ Go to pageGo to page: 1, 2 ]

Jamie

17

3657

Sun Mar 28, 2010 2:29 am

zen2010 View the latest post

There are no new unread posts for this topic. 2 month update

[ Go to pageGo to page: 1, 2 ]

sofia

15

2650

Thu Jul 29, 2010 4:56 pm

ccsviadvocate View the latest post

There are no new unread posts for this topic. Two month update

[ Go to pageGo to page: 1, 2 ]

CaptBoo

20

2022

Tue Nov 30, 2010 6:07 pm

blossom View the latest post

There are no new unread posts for this topic. Three Month Update

CaptBoo

7

1126

Mon Jan 03, 2011 10:13 pm

CureIous 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: