DrSclafani answers some questions

[bluesky63]

Dr. Sclafani -- yes, it is a most rotten disease, whether a person has one symptom or a thousand. And you know, girlgeek is right on the money when she says many doctors --and for that matter, many people who just don't how to handle it -- pull back from someone who has genuine problems. You and your work are a common topic of conversation in our extended family, and we all can't thank you enough for actually caring and daring to show it.

Hi Squeakycat -- I love the MSQLI suggestion. And I bet you could find controls matched the way you need them. But as soon as I read your concern, I started wondering whether the controls then needed to be matched for time, culture, etc. -- then I thought, wow, I'm getting into ridiculous minutiae that most studies never bother with. Of course the editor in me loves the pedantic nature of these issues.

About BNAC: I have to chime in with Johnson (the opinion! the chutzpah!). If you are studying a disease known to have an increased incidence in family members, even if the incidence isn't massive, you cannot consider family members to be healthy controls, because we do not know the source of the family predisposition. Lifestyle? A genetic issue? In which system, a primary straightforward one like an inherited collagen problem, or a hidden one like a tendency toward malabsoprtion in the mother that gives rise to the secondary symptom of malformed veins, etc.?

Hey girlgeek, you and I could have a great time at a museum. We could just keep coming back to the first exhibit, and it would all be so fresh and amazing. Seriously, I find that cognitive problems are among the hardest for other people to understand and sympathize with. In my life, almost everyone is compassionate when they see, for instance, that I need a wheelchair to cross a street.

But to me my cognitive problems are no different than visible physicial problems, and they should have the same compassion. Instead, many people get irritated and say things like . . . for god's sake, can't you just think . . . hurry up . . . try *harder* to get organized . . . repeat it *again?* . . . where's the list we just spent an hour making . . . how could you forget this, it meant so much to me . . . etc.

If we had the visual equivalent of a wheelchair for the brain, maybe people would get it.

Of course if I wore such a thing my middle school daughter would never be seen with me.

Anyway, this is one of the major things that got me excited about CCSVI -- reading that after Liberation, some people experienced a lifting of their confusion. That would be huge.

OK, I've had my moment with my invisible friends. Back to the family.

[drsclafani]

I think that this was one of the flaws in BNAC (I think it is flawed, anyhow...), in that they did use family members as healthy controls, but just because they had no "MS" symptoms does not make them healthy.

I think that family members should be excluded from consideration as healthy controls.

i completely agree, especially as there is a chromosomal abnormality

Are we being a little hard on BNAC? The data Dr Zi presented at the AAN showed there was no difference b/w healthy controls who weren't family members and those who were. It also matters whether the family member is a blood relative or not. We don't know how their sample breaks down in that regard. Maybe they were all spouses related by marriage, not dna.

We should be hard on all studies. And we should be harder on all those who treat without publishing or collaborate with those doing the research

if we are not skeptical and push the designs and the data, I can think of a few people who will do it for us, and less constructively.

I think what Dr Zi has done is great! validated urgently the work of DrZa
but we have to acknowledge potential flaws. He needs to re-do the test as his experience, and that of his technologists improves. Otherwise I will have skepticism about his low numbers of correlation compared to dr zamboni's.

Dr Zivadinov is a very impressive researcher. He is strong enough to take the criticism. We do not need to idealize him.


nor me

[drsclafani]

Hi Dr. Sclafani,

My wife got a doppler ultrasound done recently. In the supine position, it showed no narrowing, but in the erect (sitting up) position, it showed significant narrowing in the left & right IJV. So when the venography was completed, it showed no narrowing. Because the venography showed no narrowing, no angioplasty was done. After getting the results of the ultrasound, this is not what we expected. Have you ever encountered this before? Is there a chance that something got missed during the venography?

The ultrasound also showed reflux. I need an answer from you Dr. Sclafani. Should my wife get rescanned?

off line

[girlgeek33]

Hey girlgeek, you and I could have a great time at a museum. We could just keep coming back to the first exhibit, and it would all be so fresh and amazing. Seriously, I find that cognitive problems are among the hardest for other people to understand and sympathize with. In my life, almost everyone is compassionate when they see, for instance, that I need a wheelchair to cross a street.

But to me my cognitive problems are no different than visible physicial problems, and they should have the same compassion. Instead, many people get irritated and say things like . . . for god's sake, can't you just think . . . hurry up . . . try *harder* to get organized . . . repeat it *again?* . . . where's the list we just spent an hour making . . . how could you forget this, it meant so much to me . . . etc.

If we had the visual equivalent of a wheelchair for the brain, maybe people would get it.

Of course if I wore such a thing my middle school daughter would never be seen with me.

Anyway, this is one of the major things that got me excited about CCSVI -- reading that after Liberation, some people experienced a lifting of their confusion. That would be huge.

OK, I've had my moment with my invisible friends. Back to the family.

LOL I am always meeting new people, movies are always new, etc!

I will say this, my head is clearer, so the fog has definitely lifted post liberation. And I think I do have some moments when recall is spot on, right away, which was unheard of for me. So I'm really hoping the small improvements with cognition will keep going and become more improvement as time goes on.

Lists, HA HA HA HA, your funny! Still can't do lists, although I've become optimistic and I'm carrying a little spiral notebook. In 3 weeks, I've written 1 phone number in it and handed it to someone else to write their email. Other than that, blank pages...

Sooooo, Dr. Sclafani. I've been reading some things in which people are taking supplements that are supposed to help with iron chelation. Or things that can be taken or done to help further improvements after liberation. What are you thoughts, if any, on supplements. Do you have any suggestions? What other things that you might recommend a patient do after liberation to further improve health, deal with lesions on the brain that still have an impact? If you have no experience to offer insight into this, aside from a neuro, what type of Dr might you suggest patients see to allow for medical advice to deal with remaining lesions?

[Cece]

To be so articulate and intelligent on subjects some of the time but at any time, doesn't matter how intelligent I am, I'm utterly incapable of doing the simplest of tasks.

Oh I can relate to what you and bluesky63 are saying. Here is mine: I don't recognise people right off and don't remember what we were talking about last time we talked, so when someone comes up and starts off talking, I am at a double loss but try to fake it until I catch up. I hate talking on the phone: can't shut out background noise, can't keep up a quick pace of conversation and am self-conscious about it. I have made money writing fiction in the past and greatly enjoy writing but it is much more of a struggle than it used to be. (On the up side, I think my cognitive issues do cause me to be able to look at my own writing as if it's fresh; one fiction-writing tip is to just let your novel sit for two months and then when revising things will leap out at you as right or wrong; I get that experience pretty much every time I sit down to write. But I'd rather have the ability to hold it all in my head the way I used to.) Four years ago, when I had a relapse, there was a night when I was watching Survivor with my husband and, when they explained the rules for whatever immunity or reward challenge it was, I didn't catch them. I even said, "Huh! I stopped listening when they explained, let's rewatch that." But as it turns out, the next week, I "stopped listening" when they explained the challenge rules again, and I had to chalk that up to something lost in the relapse: following complex instructions. (Run here, swim there, break that, do this puzzle, climb up, release a flag, you win!) And I now concentrate when watching Survivor and I can mostly keep up and I'm glad I recovered some of that. But not all of it. I am not ashamed of my very occasional foot drop issue and I am not ashamed of frequenting the bathroom rather often but I do try to hide the worst of the cognitive stuff.

[thirdday]

Hi Dr. Sclafani,

My wife got a doppler ultrasound done recently. In the supine position, it showed no narrowing, but in the erect (sitting up) position, it showed significant narrowing in the left & right IJV. So when the venography was completed, it showed no narrowing. Because the venography showed no narrowing, no angioplasty was done. After getting the results of the ultrasound, this is not what we expected. Have you ever encountered this before? Is there a chance that something got missed during the venography?

The ultrasound also showed reflux. I need an answer from you Dr. Sclafani. Should my wife get rescanned?

off line

What do you mean by off line?

[bestadmom]

Thirdday,

Either send the good doc a private message thru tims or check in your pm in-box if you don't have it set up for email notifications when you get pm's.

[Cece]

Dr. Hubbard and Dr. Haacke are using fMRI and BOLD technology to look at oxygen levels pre and post angioplasty. Dr. Hubbard measured his son's oxygenation levels, and the results were impressive:

link to results
cheer

Oh yes.

[Nunzio]

The ultrasound also showed reflux. I need an answer from you Dr. Sclafani. Should my wife get rescanned?

off line

What do you mean by off line?

Hi thirdday, check you PM (private Meassages) could you forward the answer to me too? I just like to know if I was off by a lot
Thanks
Nunzio

[1eye]

Dr. MacDonald claims to be following a rigid protocol he got from traveling to Ferrara. Can you say what the difference, if any, is between yours and his diagnostic technique. If not, will you get that information from him or from a trip of your own?

As far as I can see, lack of information and deliberate misinformation are the main things enabling all the FUD. Dr. Haacke has designed a very sensitive test for blood oxygen do you plan to acquire a machine of your own? How are you/are you intending that any of your patients in the test get other testing besides dye-based venography?

I hope you have the approval of an IRB soon. Is there money delaying it that needs to be followed?

[NZer1]

Two things. The thing we value most or measure ourselves by will be the thing we want back most of all. IQ, physical, parenting, income earning, supporting others, independence,,, etc.
Second thing. The trial/next group of treatments could have groups that have targeted specific outcomes based on their symptom type. The chances of getting success can be greater if the groups are loaded so that historical success from those who have already been treated is used as the learning curve to choose the symptom type in groups which will improve the success of each trial group.
Successful outcomes are more likely and a group that is more for compassionate and QOL reasons can become purely for study purposes and enables them to be treated.
In other studies of drugs the same methods are used but not acknowledged or advertised.

[Oceanlu]

Dr. S,
I have a baclofen pump. Can an MRV be done on me?

[Johnson]

The cognition references made me laugh - as sad as they are.

Bluesky - I would have fun with you at the museum too, but first, I would have to remember what city I am in, and why. A couple of weeks ago, I was at a public place (rare for me), and a young woman said hello to me by name. I turned around, and just stared at her - thinking that I was so lucky to be noticed by a beautiful young woman, and thinking that I vaguely recognized her. She said "It's Bonnie", and I realized that she is my 24 year old niece, whom I have known for all of her life. That freaked me out. I don't recognize some paintings and writings that I have done as my own. I have trouble understanding that it is 2010 too.

I always took solace that I would still have my mind if my body failed me. It is a cruel joke that our minds go too. It is my worst, and least visible symptom. Ah... I was always told that I was too smart for my own good... Laugh

[Donnchadh]

One of the many positive effects of my liberation procedure was that my mind went back into hyperdrive....felt like when I was back at college.

Now that my "MS" symptoms have returned, my focus has narrowed down again on thinking where my feet are as I stumble along.

I can hardly wait to be cured! It feels like each precious, irreplaceable day is being wasted...so much to do, but I am lucky if I can get one major thing done each day.

At least I know now what needs to be done.

Donnchadh

[L]

I have no problems with cognition or fatigue. None with my arms.

Bladder trouble, terrible spasticity, I've been unable to walk for a year and a half. Things could be worse but I'd be more than happy with them getting a little better.