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 7:17 am


All times are UTC - 8 hours [ DST ]




Post new topic Reply to topic  [ 7 posts ] 
Author Message
PostPosted: Wed Nov 25, 2009 5:18 am 
Offline
Family Elder
User avatar

Joined: Tue Nov 24, 2009 4:00 pm
Posts: 860
Location: India
Folks,

I am new to this forum.

* I would like to know if being diagnosed with MS is a must to have this procedure?

* What if few other issues that behave like MS are indeed caused by CCSVI?
(e.g. fibrymyalgiz)

* It is possible that CCSVI leads to different types of issues depending the area and level of insufficiency?

* Is it not enough if the scan shows deformity and the patient has symptoms though he may not strictly have > X lesions?

I have all symptoms of MS but have not been formally diagnosed with it.

Really curious to know ...

Regards,


Top
 Profile  
 
 Post subject:
PostPosted: Wed Nov 25, 2009 6:16 am 
Offline
Volunteer Moderator

Joined: Sat Mar 11, 2006 4:00 pm
Posts: 7617
hi sbr, ccsvi is in no way part of the diagnostic process in ms, to date. in the future, we shall see.

yes it is possible that blocked veins in diff places could cause diff issues.

do you have fibromyalgia?

if you are interested in developing a nutrition program there are a few good ideas out there (see signature attachments) and i can help you if you need to ask questions.

take care,
jl

_________________
my approach: no meds so far - just balanced whole foods (partial 'paleo', much less outright elimination), science, supplements, & bloodwork
my regimen - www.thisisms.com/ftopict-2489.html
www.whfoods.com, www.nutritiondata.com


Top
 Profile  
 
 Post subject:
PostPosted: Wed Nov 25, 2009 7:22 am 
Offline
Family Elder
User avatar

Joined: Tue Nov 24, 2009 4:00 pm
Posts: 860
Location: India
jimmylegs wrote:
hi sbr, ccsvi is in no way part of the diagnostic process in ms, to date. in the future, we shall see.

yes it is possible that blocked veins in diff places could cause diff issues.

do you have fibromyalgia?

if you are interested in developing a nutrition program there are a few good ideas out there (see signature attachments) and i can help you if you need to ask questions.

take care,
jl


Hi JL,

Maybe I was ambiguous ... apologies
My question was whether to have the liberation procedure one needs to be medically diagnosed with MS. Is it not enough that the patient has the following 2 complaints:

* neurological complaints
* venous insufficiency

We all know that lot of patents spend even 10+ years before they are formally diagnosed to have MS.
To put it in a different way, there is a venous problem, why not correct it!
What is the need to wait for lesions to show up on MRI.

Right now I am not on any therapy. I take pain killers when I cannot endure the pain any longer. For last 3 months, I have started keeping my head elevated when I sleep. That has helped to some extent. I have also started taking cod liver oil tab. twice a day for last 1 month. I have felt much better than before. BTW, I live & work in India ...

I really appreciate your help ...

Regards


Top
 Profile  
 
 Post subject:
PostPosted: Wed Nov 25, 2009 7:44 am 
Offline
Family Elder

Joined: Tue May 19, 2009 3:00 pm
Posts: 669
So I take it you have had an mri but it shows no lesions? Have you had a lumbar puncture and what did it show? Has your neurologist ruled out other things and said it's probably MS?


Top
 Profile  
 
 Post subject:
PostPosted: Wed Nov 25, 2009 7:59 am 
Offline
Family Elder
User avatar

Joined: Tue Nov 24, 2009 4:00 pm
Posts: 860
Location: India
Rokkit wrote:
So I take it you have had an mri but it shows no lesions? Have you had a lumbar puncture and what did it show? Has your neurologist ruled out other things and said it's probably MS?


When the MRI was first taken, it showed healed lesions. But the neuro said that this is not MS (I dont know why). I went to few other neuros after that but nothing concluded. That was 12 years back. I have never had nerves to visit a neuro after that. My condition is not very bad in the sense that there are no major physical disabilities.

I have:
cognition issues
foggy head
body ache
blurred vision
rigid back

Apart from that I also have BP and GERD.

So, thats my story. I was somehow very sceptical about using immuno suppresents and felt that it would make my condition worse. But when I see this new treatment, I was thinking maybe it is time to go back to a neuro and ask about this treatment ...

Thats my story ...

Regards,


Top
 Profile  
 
 Post subject:
PostPosted: Wed Nov 25, 2009 8:12 am 
Offline
Family Elder

Joined: Tue May 19, 2009 3:00 pm
Posts: 669
sbr487 wrote:
But when I see this new treatment, I was thinking maybe it is time to go back to a neuro and ask about this treatment ...


That would be an excellent approach a few months from now. Right now it may be hard to find one that is informed enough to help you pursue it.


Top
 Profile  
 
 Post subject:
PostPosted: Thu Nov 26, 2009 12:59 am 
Offline
Family Elder
User avatar

Joined: Tue Nov 24, 2009 4:00 pm
Posts: 860
Location: India
I think you are more optimistic than I am. I was putting a target of 2 years for it to become a reality ...

Take care ...


Top
 Profile  
 
Display posts from previous:  Sort by  
Post new topic Reply to topic  [ 7 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. second ccsvi procedure

Jdoyen

14

1771

Sun Mar 13, 2011 10:16 pm

CD View the latest post

There are no new unread posts for this topic. CCSVI Procedure - What to do

Jemappellesophia

3

791

Fri May 20, 2011 7:30 am

Cece View the latest post

There are no new unread posts for this topic. ccsvi cost of procedure

rethink

14

2229

Sun Jan 17, 2010 11:14 am

jay123 View the latest post

There are no new unread posts for this topic. Anemia after CCSVI procedure

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

magoo

34

4935

Fri Feb 26, 2010 11:56 am

magoo View the latest post

There are no new unread posts for this topic. RE:CCSVI PROCEDURE IN SYDNEY

seeva

8

1355

Tue May 25, 2010 12:50 am

smokey 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: