This Is MS Multiple Sclerosis Community: Knowledge & Support

It was hilarious. I was at the hospital today, and I ended up impressing the nurses.

Me: "Do you know that your internal jugular veins only work when you're lying down? But when you're standing up, they collapse, and your vertebral venous plexus takes over the venous outflow instead?"

The nurses did not know this, but were mighty impressed by this little piece of medical trivia that I shared with them.

we are willing to get out and push the train, if that is what it takes...

_________________
"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition

Hello all, I have been lurking since fall 2009 on your forum, was close to getting an appointment with Dr. Sclafani just prior to the weekend Marc wrote about him...but never went ahead due to insurance coverage issues.

I am so facinated with this thread, and this whole site.

Dr. Scafani you are truly remarkable and I wish you much success in your continued work to treat venous anomolies. I hope to meet you someday.

Reference your idea on creating a data base, I am not sure how many of you are aware of this Patientslikeme site...they do collect data...once you create an account you can create a profile for yourself, choose from a list of dozens of MS symptoms..the list is incredible...once I started reading it was like wow, all these people have that too? like having a dream that skips like a broken record? ever had that anyone? [http://www.patientslikeme.com/multiple-sclerosis/community] (hope I pasted this correctly, if not sorry)

Anyway, this is just an example of what can be done online, there are over 18,000 patients registered here all with data being filled in, you can run research reports, create graphs on when your various symptoms are active...lots of stuff. I am sure it is funded by some big drug company in the background...but it is kind of neat.

There are so many variables in the environment that could cause this condition we are all dealing with...and that could aggravate symptoms....that could be tracked in a simple survey monkey type tool...just answer yes or no....everything from did you have a smoking mother or one that was exposed to second hand smoke, to being gestated in a low sunlight period of the year (we should collect birth months for sure, there was a study in Scotland that showed a real correlation here), to having mono (have you seen Dr.Julie's thread on that an About.com?), to being vaccinated, to eating too much meat or iron rich food(north and southern hemisphers tend to do this), to Vitamin D defficiencies in childhood (again North and Southern hemisphere connection) to using artficial sweetners, to using illicit drugs, to eating too much MSG or too little zinc, to living where there are seasons (eg north and southern hemispheres) and therefore being indoors alot, being exposed to off gases from furniture, carpet and other building materials, or maybe a connection to some medication our mothers took while pregnant...the list goes on, and on...

Now that I am "out" I am happy to help, you all are very brilliant, funny and so dedicated to the cause, it is a pleasure to introduce myself to you all, I feel like I know many of you all already.

Onthelake
[/url]

Dr. Sclafani,

John and I are wondering why he could not have this procedure done as elective? He paid the cash upfront for it and it should be his choice to do this. It is not like he submitted to insurance and they are denying payment.
I do understand on your end that the hospital is saying NO you can't do this right now. I just wondered from someone paying cash and electing to do this perspective. TY in advance. Billie and John

Firstly thank you Dr for giving so-many of us HOPE, it makes a difference and so have you. It is interesting that the CCSVI wheel has turned the way it has! We MSers struggle to be diagnosed because we have a disease that is not understood or measurable, and to add to that Neurologists are given the task of diagnosis of a 'grey' disease when they only work in black or white. The problems we have being heard and being able to measure our disabilities are now slowing the progress of understanding CCSVI. To measure outcomes of vascular treatment is virtually impossible for many of us as our improvements are anecdotal in essence. It seems that Universities and Hospitals are saying that because our disease is not measurable the out comes of surgery are also not measurable therefore will no longer happen!
Sadly it seems that we are being told the same old "if I can't see it you don't have it!" We need to find better ways to quantify our disability that are transferable across nations and institutions. Web sites like the one on the posting from Onthelake above must be a start to bypass the lack of scientific diagnostic data on the measuring of MS.
Keep Hoping!

Great find Onthelake. I can see this being very useful. Is there a check box for anything CCSVI ? If not there needs to be one for diagnosis and a pulldown for how it was done. Another section if you've had the procedure done or when you are scheduled. I've only just started and I'm sure I'll have a better idea by the end of the week. Dr. S, if I can be of any help let me know. This shouldn't be overlooked !

You probably could find someone to do it....I am sure that many private physicians will treat you. If that is the way this unfolds, who will write the guidelines, the standard,s. Who will assure quality. These physicians They may or may not practice state of the art or have appropriate qualifications, etc

I would predict however that if this treatment proves to be correct, YOU will clamor for quality of care, proper credentials, published outcomes, etc.

Look, we have a handful of groups treating patients who any serious numbers. Each has his own way of doing this. Don't you want to know which is best? How are we going to learn that if it isnt published. and it shouldnt be published if you, the patient, have not been informed and protected

If any patients had signs and symptoms of CCSVI and had no MS, it would be easier to separate. Unfortunately, that is difficult so you cannot separate the siymptoms of MS and CCSVI .........................yet.
finding that out is research

is that all?

I will be reviewing my cases, writing an article for radiologists, cardiologists and surgeons, enhancing my system so i can do more patients each week when i return, after all, i have already inconvenienced about two months of my patients because of this delay.

Doctor: If the end result of veins flow insufficiency is deposit of iron (which trigger the auto-immune reaction I guess); why cant we first detect high level of iron in the likely places and correlate with the venous system at that location? Since stenosis might be dynamic or even difficult to discern sometimes throughout Doppler/MRx.

Thank you for your continuous help and for your time

Algis

Dr. Sclafani
Thank you for all your help to Ms sufferers -May you be blessed for your goodness

good question. There are other diseases that lead to iron deposition besides MS. besides it is theoretical that iron deposits lead to autoimmunity

Dear Dr. Sclafani
We have learned so far that the IJVs and VVs are the main blood drainage canals in the supine position and in the sitting position respectively. It is said that in the sitting position the IJVs should be collapsing. Does this mean that when sitting no flow should be detected on the IJVs? Or that the IJVs diameter should be decreased by some percentage X?
Any elaboration on the subject would be very helpful. Thank you in advance.

Hi Dr. Sclafani,

Can you clarify and expand on your above quote, if that information is not inappropriate.

I was on your waiting list, but without a specific date. I love your humor. I fit your early description of forum members as "tough and insatiable." However, though my libido may be gone due to MS/CCSVI, my hope and thirst for knowledge is not!

Thank you,
Melanie

Doctor:



Of course; that is understood; but we are already 'diagnosed' with MS therefore it narrow down the chance of having those deposits by other illness; although it does not exclude it.

But this is more a wild thought than a call for answer; thank you