This Is MS Multiple Sclerosis Community: Knowledge & Support

I have to post periodically so I get an email whenever this thread is changed.

mum
i remember when i was a medical student. we were studying hashimoto's thyroiditis, an autoimmune disease of the thyroid gland that leads to hypothyroidism. It is ten times more ocmmon in women than me....yet the week we studied it, student health service saw an epidemic of hashimoo's thyroiditis amoung male students. Boy did they get a good laugh at our expense. I never caught it....i was busy studying ethology, the study of animal behavior instead of studying obstetrics.

it is important to realize that this is a common phenomenon. Suggestion is a dangerous thing

that said, budd chiari syndrome is an uncommon disease, 1:100,000 patients. even more uncommon as a congential disease. It leads to portal hypertension, fluid build up in the abdomen and a big liver.

geekgirl

i think that the diagnosis of ccsvi is difficult. none are expert at this since we are still in the phase of discovery. I would not trust one study. i would not trust anything short of catheter venography with ivus

Dear Dr. Scalfani, I know a similar question has been posted before, but I kind of have to do it myself:
My husband had his MRI on Monday and the radiologist did say that he basically has no experience with the venous system and the interpretation on the scans, which was fair and we knew that.
He never the less said, that there is abnormality in the vens in the area behind the ears, god I am not a doctor and do not know the correct term, he said that it could either be a stenosis or just a normal abnormality, since the venous system is clever is finding it ways around? And for the rest he did not see anything spectacular, unfortunately..
My question know, wrt liver venes threat, does such a thing like a normal abnormality exist from your point of view?

I my world I would say that a normal abnormality needs to be looked at as well as to differentiate if it is a stenosis or not??, what do you think?

And thanks for answering!!
best regards from Germany
ines

I have to wonder if a "normal abnormality" is akin to "a little bit pregnant".

Some of these guys have been reading too much Orwell, or too much Lewis Carrol.

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My name is not really Johnson. MSed up since 1993

indeed it did sound strange but he was really pointing out that he is not an expert;-)) I guess my husband has anway to go for the invase procedure and doppler to have an almost chrystal clear result:-))

And not surprising reaction, as this "normal abnormality" issue was the same reaction I faced in Belgium, when showing my general practioner my doppler result. "Oh, interesting, so what's this? Considering this a problem? Nodding ironically...This does not mean anything...your other jugular will just compensate for that...". He even approached me angrily why all MS patients were suddenly coming to him with this and that as long as the Neurology research dep in hospital (which he had contacted) would not take action, this could not be scientifically sound. He is now no longer my practioner, although know him since childhood...to react so insensitively and offensive with a patient seeking help/advice, there are other ways of expressing your opinion...
My Italian practitioner fortunately is much more supportive...otherwise...

And the Neurology dep in hospital indeed then told me that as long as there would not be any related symptoms caused by this, such an issue would not be worth treating...and should they start a doppler-trial one day, I would already be too advanced in terms of my medical treatment to participate (sorry?)

But how can they 100% know/judge from which root symptoms such as fatigue/instability and pins/needles/numbness sensations in hand and feet are deep-down coming from? Noone can exclude anything at this stage! Such answers were therefore completely misplaced, but the aggressiveness of their tone pointing against me and my research/action, was at the time in Jan very insulting/painful for me. Guess now that got to know there is a group of more open-minded supportive doctors and researchers, got a thicker fur to just ignore such opinions...

hm, so at the end of the day it was acctually "good" news, that he is normal abnormal;-))?

Yes, I would think if the radiologist was not trained for the CCSVI protocols, the "normal abnormality" could indeed be a CCSVI issue that is underestimated...and other additional tests as doppler, maybe a more specific MRV according to CCSVI protocol + venography should show

YES!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! I am staring very slowly to be very excited.....thanks for "talking" to me....and let wait and see what Dottore Scalfani will say:-))

Dr. S-

You have discovered 100% of your MS patients have CCSVI. Medical experts agree that catheter venography is the gold standard for ccsvi diagnosis.

Why is everyone trying to diagnose ccsvi using inferior techniques?

Hey Dr. S--
would love your insight into the topic of IJVs, collagen and possible connective tissue disorders- in regards to what you've seen in MS veins. Check the topic link below out when you have a chance.
thanks for all you are doing!
cheer

http://www.thisisms.com/ftopict-11311.html

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Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS

Would this be an area where a rheumatologist would be a good resource? The whole connective tissue thing?

How are you doing Dr. S?

In the last 3 weeks I have felt my neck veins pulsing/throbbing quite strongly, even while looking in the mirror you can see them throbbing. It is much less this week. What is the relevance of this? Coincidently a couple of weeks ago I was close to a relapse as well.

In researching for a question, I put together a list of the good doctor's responses so that I could more easily reference them. I thought it would be of great help to others to share. Hope this helps someone! (Most responses are referenced)

Page Question Topic
1 Neck
Colleague acceptance
Valve probs
New problem in jugular
Stenosis come and go
2 Effects of low flow
Collateral veins
Contact info
3 Blood flow
Venogram
4 Jugular access
Low blood pressure/mean transit time
Venography
Venography
Angioplasty debris
5 Angioplasty nerve damage
Venoplasty through heart
Stenosis location
Valve problems
6 Intravascular ultrasound
Collapsing veins and treatment
Ballooning skeptics
Ballooning solve valve probs
7 Dr. Love
Alternative solutions
Flow and reflux
Lumbar veins
Spinal cord drainage
Angio and stents
8 New covered stent
New stent development
9 Vein repair
Blood circulation problem
Angiogram CCSVI diagnosis
Pressure gradients
Stents
10 Pocket in IJV
Procedure curiosity
11 Blood flow vs lesion location
Veins in CCSVI
12 Addressing stenosis prior to procedure
Restenosis cause/prevention
13 Too much brain drain
Restenosis prevention
Doppler question
IBT
Cutting balloon
14
15 Vein narrowing quantification
Vein wall weakening
Doctor experience
Vein scenario question
Venogram learning curve
Sleeping position
Sclafani peers
16 Childhood CCSVI detection
17 Childhood heart operation
Pressure gradients
Ballooning veins
Procedure follow-up
Treating early MS'ers / CCSVI
Problems found in all patients
Seizures and angio
18 Angioplasty
Vertebrobasilar insufficiency
Collaterals and stenosis
Situation impression
Distending vein / collaterals
19 mailto:ccsviliberation@gmail.com
Cold hands/feet
Low blood pressure
Surgical repair of stenosis
20 Presence/absence of vlaves in jugulars
Radiation and CCSVI
Bad joke about Hillary Swank (diet)
21 Upper narrowing significance
Sclefani's dad/childhood
Blood thinners
Vascular malformations
Ultrasound question
Testing
Post-procedure
22 Flying and anticoagulation
CT-V Scan vs MRV
23 Pre-departure advice
CT-V question
Vein elasticity
Flying and anticoagulation
Real stenosis
Vein scar tissue
24 Causes of narrowing
Radiology 101
25 MRV question
Femoral nerve damage during angio
High stenosis
Colleagues
Improvements?
26 Sclefani procedural improvements
27 Leiden Factor V and stents
Azygous
Sinuses
Inversion
Legal fear / procedure stalls
28 Elastic recoil
29
30 MS treatment resistance
Research and procedure
Research and procedure
Research and procedure
31 Elective procedure?
Iron theory
32 Neuro participation w/ Sclefani
Treatment complication comparison
33 Kuwait
Positional flow
Neuro recruitment
34 Controls
35
36 Only 7 years of proof…
Insurance economics
37 Procedure risk
Iron theory
38
39 Iron question
Iron deposition
Risk-benefit
Kuwait comments
Old dogs…
Sauna post-treatmenr
Umbilical cord question
BNAC
Diagnosis/procedure codes
40 A new inspiration/gratification
41 Dr. Sacks
Procedure stats
Congenital/non-congenital causes
42 Only 1 jugular vein
Hippocrates Oath (modern)
43 Fetal demise
Crappy vein syndrome and MS
Invisible "missing" jugulars
Vein dye
German peers
Red feet
44 Vasodilation
IRB process
How to help Dr. S
Pregnancy stuff
Stents
Physical therapy
45 Student interest?
46 Thalamus
Vein treatment
Stent issue
Pregnancy and blood volume
Chiro neck manipulation
47 High EDSS question
Azygous MRI imaging
Carotid artery rubbing, sleepiness
Legs after treatment
Contact info
48 Fatigue vs Sleepiness
Zamboni pathological reflux definition/paper
"Confounding variables"
Multiple angio's
Duplicity and drainage of critical areas
MS and multiple diseases/conditions
49 The power of suggestion…

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If you can't explain it simply, you don't understand it well enough. - Al Einstein