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 Thu Jun 20, 2013 3:17 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 3 of 4
  [ 50 posts ]  Go to page Previous  1, 2, 3, 4  Next
  Print view Previous topic | Next topic 
Author Message
msh
 Post subject:
PostPosted: Sun Dec 27, 2009 12:33 pm 
Offline
Family Member
User avatar

Joined: Thu Dec 17, 2009 4:00 pm
Posts: 28
I was told that an MRA will also pick up veins on the contrast dye-I assume they use contrast as the standard protocol.
No radiologists out there on our site?
michele
Top
 Profile  
 
MamaGirl
 Post subject:
PostPosted: Sun Dec 27, 2009 1:29 pm 
Offline
Getting to Know You...
User avatar

Joined: Sat Nov 14, 2009 4:00 pm
Posts: 18
jenf wrote:
Hi Michelle,
That's unbelievable! And here's another irony of this, which I didn't even connect until I read your post; Dr Herbert was the 3rd Neuro I went to after my introduction to this wonderful disease this past spring. I used the word "was" because I went to him once for a consult, asked him about LDN, and he chuckled and advised me with that gentle "pat on the head" approach that LDN was just "internet stuff". Amazing how this "internet stuff" has almost completely eliminated all of my MS symptoms! But he was more than happy to set me up with Rebif, which I obviously had no interest in.

The fact that he's not only aware of CCSVI, but also worked on the paper, makes me livid as well! I understand why doctors wouldn't want to tell us about CCSVI to not get our hopes up, but if he has FIRST HAND KNOWLEDGE of this, why on earth wouldn't he mention it to his patients so they could chose if they wanted to be screened? Especially if they have one of the highest power MRI's out there? I understand medicine is a money business, but what happened the the "heal the patient' ethics? I have half a mind to schedule another appointment with him so HE can read my MRV!!!
omg... I also saw Dr Herbert a few years ago and he wanted me on Tysabri right then and there and I said no, I would have to go home and discuss it with my kids and research it. He insisted it was good on his patients, though it was relatively new at the time and I stood my ground and said maybe at another time. I went home to research this new med and found out a few days later it was taken off the market due to associated deaths. I am very very upset that Dr Herbert has known about the CCSVI associations to MS... but not surprised at all. He gave me the impression right off that he was a part of the med companies...how sad. i am also trying to find out how to get tested at NYU if at all possible. My daughter has worked with Dr Herbert to approve his MS Studies, I am asking her if there are better ways to get through to NYU to get tested...
MamaGirl
Top
 Profile  
 
msh
 Post subject: Dr. Herbert
PostPosted: Sun Dec 27, 2009 1:50 pm 
Offline
Family Member
User avatar

Joined: Thu Dec 17, 2009 4:00 pm
Posts: 28
Hi!! Wow, interesting info!
I found out that he is a paid consultant for Teva pharm-would explain a lot. Someone else also said that he played down LDN. It sounds like he has his own agenda and we are not happy about it.
How exactly is your daughter involved in his studies?
Can she get thru to him and get his to move his _____ on this? NYU definitely has the equipment and he knows Dr. Haacke and the rest of them so he has to know the protocol.
There is no reason why this isn't already moving.
Tomorrow my friend is calling to discuss it with him. Perhaps some others who know him should too? They can create their own little "study" group. Dr. Grossman is a neuroradiologist who also collaborated. I emailed him and another person from NYU on the study but have not gotten a response and don't think I will.
michele
Top
 Profile  
 
scraps
 Post subject:
PostPosted: Sun Dec 27, 2009 2:31 pm 
Offline
Newbie
User avatar

Joined: Sat Dec 26, 2009 4:00 pm
Posts: 7
[quote="jenf"]Hi Michelle,
Dr Herbert was the 3rd Neuro I went to after my introduction to this wonderful disease this past spring. I used the word "was" because I went to him once for a consult, asked him about LDN, and he chuckled and advised me with that gentle "pat on the head" approach that LDN was just "internet stuff".

Jenf:

My wife and I have had the same experience with our neurologist. About a year ago I was searching for anything that might be of benefit for my wife and I ran across LDN. At the next appointment with the neurologist we ask him about LDN and his response was that it was something that had been tried with little affect, and that there were no clinical trials to prove its benefit, so he did not recommend it. Since my wife is in SPMS he also told us that Tesabri would be of no benefit as well.

After reading all of these messages, I'm not what to believe anymore.
Top
 Profile  
 
scraps
 Post subject:
PostPosted: Sun Dec 27, 2009 2:51 pm 
Offline
Newbie
User avatar

Joined: Sat Dec 26, 2009 4:00 pm
Posts: 7
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09

Cheerleader:

Where and who treated your husband? How did you go about the process of obtaining the procedure?
Top
 Profile  
 
Algis
 Post subject:
PostPosted: Sun Dec 27, 2009 6:45 pm 
Offline
Family Elder
User avatar

Joined: Sat Nov 21, 2009 4:00 pm
Posts: 782
Location: XinDian, Taiwan
@scraps: meanwhile try to get that LDN - It worked marvels for me with no side effects. And dirt cheap.

Good luck :)
Top
 Profile  
 
bestadmom
 Post subject:
PostPosted: Sun Dec 27, 2009 7:37 pm 
Offline
Family Elder
User avatar

Joined: Mon May 18, 2009 3:00 pm
Posts: 722
Location: CT
Scraps, if you call Skips Pharmacy in Boca Raton @561-218-0111, they can tell you who to get a script from. You should also try your gp. There are several groups on Facebook and SammyJo on this site is our LDN expert.
Top
 Profile  
 
scraps
 Post subject:
PostPosted: Sun Dec 27, 2009 10:04 pm 
Offline
Newbie
User avatar

Joined: Sat Dec 26, 2009 4:00 pm
Posts: 7
To All of You:

Thx for the support and the info. I am seeing my gp on Wed. Will see if I can get a scrip then. Again Thx.
Top
 Profile  
 
SammyJo
 Post subject:
PostPosted: Sun Dec 27, 2009 11:11 pm 
Offline
Family Elder
User avatar

Joined: Wed Mar 10, 2004 4:00 pm
Posts: 197
I agree, everyone who is now in wait mode on the CCSVI procedure, LDN is your best bet to get some symptom relief, and delay damage.

What the medical experts say:

LDN fosters immune homeostasis via reduced oligodendrocyte destruction by apoptosis, reduced microglial activation, anti-inflammatory and antioxidant effects. Specifically, LDN reduces glutamate formation and accumulation, thereby reducing excitatory neurotoxicity, and oligodendrocyte apoptosis.

_________________
RRMS '96 SPMS '02 | Dual jugular vein stenosis (CCSVI) | 10/09 3 stents, 1 angioplasty. Details http://healingpowernow.com
Top
 Profile  
 
jenf
 Post subject:
PostPosted: Mon Dec 28, 2009 10:57 am 
Offline
Family Elder

Joined: Thu Sep 17, 2009 3:00 pm
Posts: 103
Location: Albany, NY
I agree with everyone regarding the benefits of LDN. When I was initially diagnosed, I researched every treatment option out there. LDN showed the most promise and the least discomfort. I thought it was worth a try before giving in to the medically approved "CRABs". Within DAYS I felt better. I really thought I was going to have to live my life in the new state of "yuckiness" that MS had left me in.

I found my Neuro through Crystal on the "LDN_Users" yahoo group. She's a great resource as well and has dedicated websites promoting LDN...

_________________
Jen

RRMS - dx 06/09
LDN - 4.5mg 06/09-present
Copaxone - 06/10-09/10
Doxycycline - 09/10-02/10
Flagyl: 02/10-12/10
Bicillin IM: 09/11-03/12
CHRONIC LYME - 12/10

Remember, today is the tomorrow you worried about yesterday..
Top
 Profile  
 
msmything
 Post subject:
PostPosted: Mon Dec 28, 2009 5:47 pm 
Offline
Family Elder
User avatar

Joined: Sat May 17, 2008 3:00 pm
Posts: 265
Location: Chicagoland
as far as the nyu stuff goes, i have contacted them at least 7-8 times over the past year or so, no replies.
I started reading more on the 7 t MRI's apparently they are not as benign as one would think, there is a recovery period. I don't know that they know what it does to the human body, messes with the chemistry set a bit.

_________________
Be kinder than necessary, for everyone you meet is fighting some kind of battle..
Top
 Profile  
 
msh
 Post subject:
PostPosted: Mon Dec 28, 2009 6:56 pm 
Offline
Family Member
User avatar

Joined: Thu Dec 17, 2009 4:00 pm
Posts: 28
Why are they so obnoxious at NYU that they think they are above the rest and don't have to bother replying to anyone? I still say picket them and then they will have to answer.
As for the effects of a 7 Tesla MRI, I am sure it has effects, everything does, but it is a risk vs. benefit decision. I think it is less detrimental than radiation from CT scans.
Who knows?
We have to just keep plugging away until we get what we want!
michele
Top
 Profile  
 
Katie41
 Post subject:
PostPosted: Mon Dec 28, 2009 9:58 pm 
Offline
Family Elder
User avatar

Joined: Sat Dec 05, 2009 4:00 pm
Posts: 179
Location: Southern California
msmything and msh, here is an explanation of MRIs, as I understand them. MRIs of the brain pull apart the water molecules. The hydrogen and oxygen molecules then have to work their way back together to reform the water molecule. Each MRI makes it more difficult for them to do that.

The first MRI, I had, made it difficult to think clearly. I had polarity therapy and that fixed it. The second MRI I had, 15 years later, had many more side effects. The top of my head at the suture line was very hot, even 10 days later. I had difficulty sleeping, thinking, remembering. The therapist found that parts of my brain were very compressed. That would make sense since the water molecules are no longer water molecules, but individual H and O2 molecules.

I certainly agree, there are risks vs. gains; however, I'm not sure I would want a more powerful machine than the standard one currently used. Maybe they are inadvertantly doing patients a favor by not using the 7 Tesla.
Top
 Profile  
 
NHE
 Post subject: Re: MRI effects
PostPosted: Tue Dec 29, 2009 1:39 am 
Offline
Volunteer Moderator
User avatar

Joined: Sat Nov 20, 2004 4:00 pm
Posts: 2763
Katie41 wrote:
msmything and msh, here is an explanation of MRIs, as I understand them. MRIs of the brain pull apart the water molecules. The hydrogen and oxygen molecules then have to work their way back together to reform the water molecule. Each MRI makes it more difficult for them to do that.


That's really interesting. I have not of heard anything like that before. Do you have a reference for this information so that I can read more about it?

NHE
Top
 Profile  
 
msmything
 Post subject:
PostPosted: Tue Dec 29, 2009 8:40 am 
Offline
Family Elder
User avatar

Joined: Sat May 17, 2008 3:00 pm
Posts: 265
Location: Chicagoland
That's good to know katie, as most of us are propably used to a 1.5 T MRI, it's quite a jump in intensity.
I've been so sick when i've had MRI's in the past that I couldn't tell you if I'd gotten side efects from the relapse or the MRI.
I'll be having my second MRI in 3 months tomorrow morning at Northwestern as part of the intake protocol for the stem cell study.

I wonder if I'll be facing magnetic north afterwards!LOL!

_________________
Be kinder than necessary, for everyone you meet is fighting some kind of battle..
Top
 Profile  
 
Display posts from previous:  Sort by  
Post new topic Reply to topic  Page 3 of 4
  [ 50 posts ]  Go to page Previous  1, 2, 3, 4  Next

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

All times are UTC - 8 hours [ DST ]

Related topics
 Topics   Author   Replies   Views   Last post 
There are no new unread posts for this topic. CCSVI screening in NJ

CuriousRobot

3

714

Tue Mar 13, 2012 12:33 pm

CuriousRobot View the latest post

There are no new unread posts for this topic. Special ultrasound machine for CCSVI

thisisalex

5

1231

Mon Jun 21, 2010 12:26 am

thisisalex View the latest post

There are no new unread posts for this topic. GEORGETOWN CCSVI SCREENING LINK

judipom

0

816

Thu May 20, 2010 1:28 pm

judipom View the latest post

There are no new unread posts for this topic. Watch a CCSVI screening in Action

Cece

0

876

Fri Jan 14, 2011 1:59 pm

Cece View the latest post

There are no new unread posts for this topic. Georgetown University offering Screening of CCSVI

judipom

6

1446

Thu May 06, 2010 4:47 pm

Trish317 View the latest post

 


Who is online

Users browsing this forum: lena-g

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
This site does not offer, or claim to offer, medical, legal, or professional advice. All treatment decisions should always be made with the full knowledge of your physicians.


All logos and trademarks in this site are property of their respective owners. Content is © 2002-2013 by thisisMS.com.

Advertise on the premier multiple sclerosis forum