This Is MS Multiple Sclerosis Knowledge & Support Community

Squeakycat wrote: It takes about 45 minutes to complete the NMSS version of the MSQLI.

Another benefit of using this is that it has been specifically designed for the purpose of having a quantitative set of uniform measures for MS clinical trials.

The manual for MSQLI is available here.


Since this is already too long, one more thing that may be useful is to administer the questionnaire twice before Liberation to establish the internal consistency of the questionnaire and then do the same at several post-Liberation intervals such as the beginning and end of the first week post-Liberation, beginning and end of the 6th week, post-Liberation.

We will need healthy controls as well as people with MS who do not receive treatment to also participate at each of the test stages, a lot to ask!

Jason wrote:Dr. Sclafani
Many of us will be travelling with family or a helper that does not have MS, so while we are being Liberated they could be scanned as your control group.
Just a thought.

please look to see if there are published results of the test for normal controls already created. That would obviate the need to have normal controls

tzootsi wrote:Dr. Sclafani,

Since you are trying to collect data, I thought I'd fill you in on my wife's case. She has a mild case of MS, dx'd about 3 years ago. Her most troublesome symptom is a heavy right leg. She also has several other typical ms symptoms - l'hermettes, burning skin, morning spacticity, cold right hand, no real fatigue (other than the kind she gets during prolonged walks). Anyhow, five weeks ago she had the procedure done - ballooning in both jugulars, and it went very well. Interestingly it was performed by someone who you used to work with. Shortly after the procedure, her cold right hand became noticeably warmer. Lately, her l'hermettes has subsided, as has the spasticty. On a few occasions, her heavy leg has felt better, usually in the evening.
Symptoms she'd like to see improve - heavy right leg and walking ability are by far the biggie. Since she does have short bursts of leg improvement, we're hoping it can eventually become better. Any idea why her leg improvements come on in the evening?

costumenastional wrote:Dear Dr Sclafani,

i dont know if you had the time to check some of my operation captures in my so called blog.
Anyway, i want to clarify that by using your name i only ment that you thought it is possible for a jugular vein flow problem to react with the cervical spinal cord's drainage.
I did it only because somewhere in your thread following a question of mine, you were kind enough to say that cervical spine drains to the jugular veins via a complicated vein system which you described thoroughly. I also remember that you had to look it up to make sure, because i was thinking that crvical spinal cord drains to the azygos at the time.

I really hope i didnt offend you in any way by taking this kind of liberty but if so, please let me know, so i change the picture's caption immediately.

In no way i ment that you agree that MS lesions in the cervical spine are caused by problematic flow in the jugs. It is only a hypothesis for all of us (and a big hope i might add) which will take years to be proven right or wrong.

With all my respect

Spiros.

Algis wrote:Doctor: you may recall my inquiry about a total MRV/MRI - The whole package is available in The Netherlands for less than 750€ - Complete body MRV / Complete body MRI / Each principal organ MRI detailed (heart/liver/brain/lungs/kidneys/prostate for males etc...) - You also have to consultancy of vascular specialist, organs specialist, etc...

It isn't that uncommon and would have the advantage of having the whole map....

Sample:



While we are there we could make the whole tour... Laying down all day in a MR coil would change some of us from staying in the wheelchair all day....

bluesky63 wrote:I agree one thousand percent with Rhonda. (See, there's that clear math.) I have had a severe and disabling course of multiple sclerosis with symptoms in pretty much every functional system, and people always assume that I really want to address the mobility most of all, but so much of that is logistical and belongs in the realm of universal design and advocacy. If the world were designed differently wheelchairs wouldn't matter. But I digress.

No doubt at all -- the issue that has caused the most grief in my daily life is the severe cognitive problems and fatigue. When people I've known for years come up to me and start talking and I don't know who they are . . . when I get lost every day in my own town . . . when I can't follow my own children's delightful conversation . . . when I wake up with food in my mouth and the imprint of the keyboard on my face and it's still just morning . . .

Oh yeah, that plus headaches. PLEASE no more headaches. And if I might be so bold as to add one more big wish without being greedy . . . it would be so, so nice to have my head and face and vision feel halfway normal again. Not dizzy-heavy-spacey-numb-can't-even-feel-myself-when-I-eat-or-breathe-or-bite-or-rub.

I am the single parent of three wonderful children, and I would give anything to be the parent they deserve. If I could read them a story without falling asleep on the first page, help with homework, play games with my eager son who has no memory of me without a wheelchair in our life, just do any normal kid-parent things. Even hugging is planned so I won't get hurt or fall over. That's tough to explain to a loving little boy.

Hmmmm. I just read this over, and it looks to me like my most pressing symptoms are head-related -- the feeling like I might explode if I lean too far forward, being so unbalanced, vision, confusion, various cranial nerve problems, etc. Migraines too. I also have a venous angioma and seizures. Maybe a simple head transplant would do it.

drbart wrote:

drsclafani wrote:how can i explain these abrupt changes.? we can all guess cant we. perhaps myelin transmission needs certain amount of blood flow,oxygen pressure reduction, cleansing for improved function. Your guess is as good as mine at this point. Like i keep saying we are just beginning an age of discovery.

do you see a pattern that would lead you to expectations about abrupt improvements? the easy things to imagine would be type of MS, length of disease, etc.

i'm wondering though about the importance of "little veins", ones that MR can't images at 1.2mm and you can't get at with a catheter.

is there enough of a pattern of brain/spinal lesions that would lead you to expect things more specific than spinal -> azygos?

the correlation between CCSVI and MS seems so high, that it might be the people who don't see dramatic changes are the most interesting cases. they may have just as serious an issue with blockage, but at a finer grain.

Cece wrote:how about this: are you planning on directly measuring oxygenation levels? Or has Dr. Zamboni done this?

Here is what I'm finding:

Intravascular Jugular Bulb Venous Oxygen Saturation
Another method of measuring cerebral oxygenation, jugular venous oxygen saturation (SjO2) monitoring, has been used since the 1980s. Considerable research has been conducted with the SjO2 monitoring system. Monitoring of SjO2 involves use of a fiber-optic catheter, typically 5.5 french in size, placed retrograde in one of the internal jugular (IJ) veins (Fig. 5). It is tunneled up the IJ vein against blood flow toward the brain. The catheter is placed so the tip of the catheter is level with the mastoid air cells or approximately at the jugular bulb of the IJ vein (Coplin et al., 1998; Feldman & Robertson, 1997). The fiber-optic catheter measures the oxygen saturation of hemoglobin as it exits the cerebral circulation in the IJ vein and provides a continuous reading of venous oxygen saturation.

The SjO2 monitoring approach has been fairly well studied. The normal range of SjO2, confirmed in a study of healthy young men, is 55%-71% (Feldman & Robertson, 1997). Most users establish the normal SjO2 range at 55%-75%. Lower SjO2 is a cause for concern; a value below 55% reflects a state of ischemia in which oxygen delivery is compromised or oxygen consumption exceeds the supply of oxygen delivered to the brain. The low state must be treated promptly to avoid poor outcome (Nemani & Manley, 2004)

http://www.medscape.com/viewarticle/551323_6

Part of the theory is that reflux is causing low oxygenation, but if this can be quantified, I would consider that powerful evidence. I am thinking measurements pre- and post-ballooning.