Research shows no link among CCSVI and development of MS

If it's on your mind and it has to do with multiple sclerosis in any way, post it here.

Postby HarryZ » Wed Aug 11, 2010 9:59 am

And for Harry: My husband was diagnosed in 2002, but I noticed things from when I met him in 1991....they just didn't seem important enough to wonder about. He certainly had a limp, he didn't acknowledge. An eye problem the doctor thought came from a football injury. Lots of things...no need to list them now, but the point is, he surely had "MS" before he reached 20. Although it would be strange to say that, too, when some neurologists have said he doesn't have MS...he certainly doesn't have multiple scars...very few of those, so I guess he has FS, which could stand for a lot of things...


Your husband isn't the first and certainly won't be the last person that has had a "none MS diagnosis" for a very long time. That can be very frustrating for anyone.

I have always been of the opinion to go to the closest MS Clinic to get diagnosed. Although neurologists know about MS, if it isn't their specialty they have been known to make errors in diagnosing the disease. MS Clinics, on the other hand, see almost every possible symptom and situation of the disease and have a far better chance of getting it right.

Harry
User avatar
HarryZ
Family Elder
 
Posts: 2527
Joined: Tue May 25, 2004 3:00 pm
Location: London, ON, Canada

Postby eric593 » Wed Aug 11, 2010 10:19 am

The only thing that I didn't do, go on DMD's earlier, while I was still doing fine.
User avatar
eric593
Family Elder
 
Posts: 475
Joined: Sun Feb 17, 2008 4:00 pm

Postby whyRwehere » Wed Aug 11, 2010 10:34 am

HarryZ wrote:Your husband isn't the first and certainly won't be the last person that has had a "none MS diagnosis" for a very long time. That can be very frustrating for anyone.


Well, my husband was diagnosed rather quickly...after about 3 months and 3 neurologists...it's only recently that this diagnosis has come into question. Much like wheelchair kamikaze's scenario.

Eric, I wouldn't feel bad about not having the DMDs, as they only made my husband feel worse while he was on them....did nothing to stop the progression.
User avatar
whyRwehere
Family Elder
 
Posts: 908
Joined: Mon Oct 03, 2005 3:00 pm

Postby HarryZ » Wed Aug 11, 2010 12:26 pm

Well, my husband was diagnosed rather quickly...after about 3 months and 3 neurologists...it's only recently that this diagnosis has come into question. Much like wheelchair kamikaze's scenario.


All the more reason to be seen at a MS Clinic. Gee that really must be frustrating!!

Harry
User avatar
HarryZ
Family Elder
 
Posts: 2527
Joined: Tue May 25, 2004 3:00 pm
Location: London, ON, Canada

i got tested & have blocked veins . . .

Postby miracles » Sun Aug 15, 2010 11:08 pm

I'll keep everyone posted on what happens to me once my veins are opened -- I'm hoping for miracles!
User avatar
miracles
Newbie
 
Posts: 8
Joined: Sun Aug 15, 2010 3:00 pm

Postby HappyPoet » Thu Aug 19, 2010 8:12 am

Hello Harry,

You won't remember me, but you and I talked a couple of times on the BT forum many years ago. I've never forgotten you because of how kind you were to everyone and because of what a wonderful husband you always were to Marge. I even recently spoke of you here at TIMS.

TIMS is a much better place with you here, and I hope you keep participating!

Warm regards,
~Pam
User avatar
HappyPoet
Family Elder
 
Posts: 1401
Joined: Thu Jul 09, 2009 3:00 pm

Postby HarryZ » Thu Aug 19, 2010 9:01 am

HappyPoet wrote:Hello Harry,

You won't remember me, but you and I talked a couple of times on the BT forum many years ago. I've never forgotten you because of how kind you were to everyone and because of what a wonderful husband you always were to Marge. I even recently spoke of you here at TIMS.

TIMS is a much better place with you here, and I hope you keep participating!

Warm regards,
~Pam


Hi Pam,

What kind words and I thank you very much for them. I slightly remember conversing with you in the past but I've done so with so many people over the years, it's hard to keep track of everyone.

While I don't spend as much time on the MS forums as I did when Marg was alive, I do visit TIMS almost daily and still find it is the best forum for overall discussion re: MS. There are so many contributors here and even when there is disagreement among us, it is mostly kept very civil...something which doesn't always happen on other forums.

Take care.

Harry
User avatar
HarryZ
Family Elder
 
Posts: 2527
Joined: Tue May 25, 2004 3:00 pm
Location: London, ON, Canada

Postby richardcampbell » Mon Nov 01, 2010 11:07 am

cheerleader wrote:OK...two studies, the same two studies we've been discussing on here for three months. Nothing new, nothing has changed...they're just getting regurgitated in the press now.

1. German/Doepp/Doppler Study:
[...] Here's Dr. Brandes on it--via Dr. Zamboni:
http://healthblog.ctv.ca/post/When-stud ... mples.aspx

2. Amsterdam/VU/MRV study

The problem with the VU (all MRV) study was addressed by Dr. Roel Beelen of Belgium. He questioned the statistical significance of a small study and the independence of the researchers. [...]


What breaths of well considered reason these are! Thanks cheerleader!
User avatar
richardcampbell
Newbie
 
Posts: 4
Joined: Sun Oct 31, 2010 4:00 pm
Location: Vancouver, BC, Canada

Postby bil » Tue Nov 02, 2010 2:45 am

cheerleader wrote:1. German/Doepp/Doppler Study:
In the current issue of the Annals, Florian Doepp, M.D., and colleagues in Germany performed an extended extra- and trans-cranial color-coded sonography study on 56 MS patients (36 female; 20 male) and 20 control subjects (12 female; 8 male). The analysis included extra-cranial venous blood volume flow (BVF), internal jugular vein (IJV) flow analysis during Valsalva maneuver (VM), as well as tests included in the CCSVI criteria.


As I've said before, the problem with the Doepp study was position of the doppler wand. It assessed jugular vein narrowing in the “sagittal” plane (the ultrasound probe is placed parallel to the length of the vessel). The Zamboni technique uses the “transverse” plane ( the probe is placed at a 90 degree angle to the length of the vessel) to look for narrowing, webs, or abnormal valves that Dr. Zamboni believes are often missed in the sagittal plane examination.

If the wand is used in the sagittal manner--it picks up collateral flow...that's how the doppler technician at Stanford gave Jeff a "normal" result, but MRV showed it was a tortuous collateral, not the jugular vein (which was 95% gone) taking the blood back.


What has to be appreciated here is that imaging of veins using doppler ultrasound is by no means easy - and that goes for Zamboni too. This is not for want of trying over the years, the holy grail of venous doppler ultrasound is the detection of DVTs in the lower limbs, but despite the relative ease of accurately imaging the deep leg veins compared to those in the neck and head, and continuing advances in imaging technology, doppler is still nowhere near to supplanting venography for this.

As far as the study goes, they're not using a "doppler wand" which would be completely useless for this, they're using colour flow doppler imaging superimposed on a conventional grey-scale ultrasound image. The doppler part of this doesn't work so well when imaging in a transverse plane across any blood vessel, as there is effectively no doppler signal in this orientation unless you tilt the ultrasound probe anteriorly or posteriorly, in which case you no longer have a true transverse section of the blood vessel. You will see something, but unless you tilt the probe at a decent angle it'll be very small doppler shifts and very noisy, so if e.g. 2 blood vessels are not exactly parallel you could think that in one of them the blood is going the wrong way when it's really just the geometry of the localised anatomy. There is no good reason I can think of to suppose that a transverse image will be more liable to accurately identify the jugular than a sagitall image with superimposed doppler flow information, I would actually have thought quite the opposite. A good sonographer would use both anyway, although in general the sagitall is much better for seeing the bloodflow, and the transverse while useful when scanning arteries is more often used only for orientation when looking at veins.

Now onto the jugular, this is a very difficult vein to image. First of all every patient is different, sometimes you get beautifully clear images and you see clean doppler flow information superimposed where the blood vessels are, other times it's just impossible to see anything and your doppler information is a noisy mess. With some patients it might not even be possible to accurately image and measure the adjacent carotid artery, and this is far far easier than doing it for the jugular. The other thing about the jugular is that often it is continually collapsing and opening up again as you image it. This depends on factors like - whether the patient is sitting up or lying down, the angle of the bed, is their head turned to the side or tilted back, their breathing, maybe even the pulsation of the adjacent carotid artery. The point about the position of the head is important - to get a decent image and see the bloodflow you often have to turn the head to one side and/or tilt it back - there is no standard position for doing this test, you have to be pragmatic. Pressure from the probe is also a problem, especially with transverse images. You need to get a good contact between the probe and the skin to get a good image, and for some patients depending on the shape of their neck this means you've got to press down a bit to get the image. Press too hard and the jugular compresses, press too lightly and you can't see it properly. So you're trying to measure the blood flow and look for narrowings in a blood vessel which in many cases is continually opening and closing anyway, and you've manipulated your patient into a position where you can get good image quality and/or where the jugular opens up and you can get a good view of it - not easy and not at all objective.

It gets even worse with the other extracranial veins which are far more difficult to image, and if you want to try and look at the intracranial veins with doppler ultrasound you'll be doing a lot of squinting at that fuzzy grey screen.

It would be great if CCSVI turned out to be something important in MS, but I'm not surprised that the ultrasound studies are showing completely different things. This is not an exact science, and even for far easier and more routine investigations than this the results will vary greatly depending on the skill of the sonographer. Also people will often see what they want to see when they've convinced themselves of the validity of their own ideas. I'm sure that the pharma companies want to cure people AND make money at the same time, but I'm equally sure that medics and scientists want to cure people AND get published at the same time.
User avatar
bil
Getting to Know You...
 
Posts: 19
Joined: Thu May 10, 2007 3:00 pm

Postby HarryZ » Tue Nov 02, 2010 1:38 pm

scorpion wrote:Once again Sou I encourage you to read the "seven warning signs of quackery". Any of it sound familar? http://www.quackwatch.org/01QuackeryRel ... signs.html


That website is run by Dr. S. Barrett, a retired psychiatrist. I would take anything he published with a grain of salt. Barrett has been charged with fraud in the past and has been caught misleading people on more than one occasion. He doesn't spend all that much time researching his comments. Although his intentions may be good, his is a bit of a quack himself.

Harry
User avatar
HarryZ
Family Elder
 
Posts: 2527
Joined: Tue May 25, 2004 3:00 pm
Location: London, ON, Canada

Postby Lyon » Tue Nov 02, 2010 2:00 pm

.
Last edited by Lyon on Sun Nov 20, 2011 5:31 pm, edited 1 time in total.
Lyon
Family Elder
 
Posts: 6063
Joined: Wed May 03, 2006 3:00 pm

Postby HarryZ » Tue Nov 02, 2010 8:11 pm

Lyon wrote:Hi Harry,
I don't know enough about Dr. S. Barrett to argue one way or the other but the linked article was written by Robert L. Park, PhD

Wouldn't that same thought process call for considering the US Constitution worthless diatribe if the National Enquirer ever makes reference to it?


Hi Bob,

I don't know anything about Robert Park but I learned a long time ago to not take much if any credence with anything that appears on Barrett's website.

I read a long article about Barrett a couple of years ago and it was pretty disgusting to see all of the garbage that he was involved with and how he conducted himself. I even got into a war of e-mail words with him on how he ignorantly commented with nothing but lies about Prokarin when it first came out. The man spends little if any time researching most of what appears on his site and tries to use the fact that he is a MD to gain credibility for what he says.

Take care.

Harry
User avatar
HarryZ
Family Elder
 
Posts: 2527
Joined: Tue May 25, 2004 3:00 pm
Location: London, ON, Canada

Previous

Return to General Discussion

 


  • Related topics
    Replies
    Views
    Last post

Who is online

Users browsing this forum: No registered users


Contact us | Terms of Service