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 Wed May 22, 2013 10:19 am

View unanswered posts | View active topics


Board index » Treatments » Chronic Cerebrospinal Venous Insufficiency (CCSVI)

All times are UTC - 8 hours [ DST ]



Post new topic Reply to topic  Page 1 of 1
  [ 7 posts ] 
  Print view Previous topic | Next topic 
Author Message
Nasti
 Post subject: LDN and postliberation?
PostPosted: Thu Sep 23, 2010 8:15 am 
Offline
Family Elder
User avatar

Joined: Fri Mar 20, 2009 4:00 pm
Posts: 115
Those of you who were on LDN before the liberation procedure, has anyone gone off it after the surgery? Any noticeable changes? I am still on it, kind of scared to go off it, though my energy level kind of elevated after the surgery...
I would appreciate any feedback
thnx
Top
 Profile  
 
Thekla
 Post subject:
PostPosted: Thu Sep 23, 2010 8:20 am 
Offline
Family Elder
User avatar

Joined: Sun Jul 04, 2010 3:00 pm
Posts: 132
Location: Germany
I have stayed on it. I see no downside to it.
Top
 Profile  
 
adamt
 Post subject:
PostPosted: Thu Sep 23, 2010 8:58 am 
Offline
Family Elder
User avatar

Joined: Thu Mar 11, 2010 4:00 pm
Posts: 296
since starting 2mg LDN 2.5 years ago i havent got any worse - doses above 2mg made me worse and quicker than usual progression for some reason,

i was liberated last month and stayed on LDN, lucky i did as i think i have re-stenosed,

its not worth the risk of stopping LDN in my opinion
Top
 Profile  
 
MarkW
 Post subject: Stay on your drugs
PostPosted: Thu Sep 23, 2010 9:54 am 
Offline
Family Elder
User avatar

Joined: Thu Oct 19, 2006 3:00 pm
Posts: 1052
Location: Oxfordshire, England
Please stay on your MS drugs after you are de-stenosed, especially if they are producing positive effects (follow Prof Z's advice). There is some logic for trying LDN after de-stenosis (say after 3 months) if you can get it easily.
Kind regards,
MarkW

_________________
Mark Walker - Oxfordshire, England. Registered Pharmacist (UK). 10 years of study around MS.
Mark's CCSVI Report 7-Mar-11:
http://www.telegraph.co.uk/health/8359854/MS-experts-in-Britain-have-to-open-their-minds.html
Top
 Profile  
 
Shueywho
 Post subject:
PostPosted: Thu Sep 23, 2010 10:02 am 
Offline
Family Member
User avatar

Joined: Mon Nov 23, 2009 4:00 pm
Posts: 38
Location: Brantford, Ontario
Mark can you explain what the logic is for starting LDN after 3 months? My partner is having her procedure on Oct. 7th and is currently not on any dmd, but is considering going on LDN after. I would appreciate any insight you may have.

Thanks

Sheila
Top
 Profile  
 
MarkW
PostPosted: Thu Sep 23, 2010 10:20 am 
Offline
Family Elder
User avatar

Joined: Thu Oct 19, 2006 3:00 pm
Posts: 1052
Location: Oxfordshire, England
Hello Sheila,
3 months was a guess in order to allow changes from de-stenosis changes to be observed first (remylination might be just starting at 3m). There is not much science known about how de-stenosis or LDN actually work in MS. Add in people variability and its guesswork not science.
Kind regards,
MarkW

_________________
Mark Walker - Oxfordshire, England. Registered Pharmacist (UK). 10 years of study around MS.
Mark's CCSVI Report 7-Mar-11:
http://www.telegraph.co.uk/health/8359854/MS-experts-in-Britain-have-to-open-their-minds.html
Top
 Profile  
 
Nasti
 Post subject:
PostPosted: Sat Sep 25, 2010 2:01 pm 
Offline
Family Elder
User avatar

Joined: Fri Mar 20, 2009 4:00 pm
Posts: 115
I actually wanted to test the effects of CCSVI without the LDN, I know LDN works, I don't know about CCSVI... But, it seems it is not worth testing :) thanx for the feedback
nasti
Top
 Profile  
 
Display posts from previous:  Sort by  
Post new topic Reply to topic  Page 1 of 1
  [ 7 posts ] 

Board index » Treatments » Chronic Cerebrospinal Venous Insufficiency (CCSVI)

All times are UTC - 8 hours [ DST ]

Who is online

Users browsing this forum: blossom, Robnl

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: