This Is MS Multiple Sclerosis Knowledge & Support Community

simone wrote: I hope the plumbing gets fixed soon in the houses now that we have all the modern conveniences it would be great to be able to use the toilet.
Bad joke.

I thought that it was a great joke!

Rosegirl wrote:My only symptom is not being able to walk, so I can't imagine how difficult life is for those of you suffering from all the other awful things MS does.

But for those of us who, on our good days, "wall walk", we desperately need to be able to walk normally. I bounce off the walls in my house and I use a scooter when I go out.

But at home, I can't carry a load of laundry (or almost anything else) because I have to hold on with both hands. I can't ever get to visit friends at their homes because there's always a step that means my scooter is useless. Parties and even just visits to the neighbors are beyond my reach. Now, my husband and I never get invited anywhere because everyone knows I can't get into their home.

My husband asked me last night why I never watch the DVDs we get from Netflix. I finally told him that I can't get across the room to the TV to load the DVD player. I can't get across most rooms in my house just to look out the window. I can't get to the door in time to ask the UPS man to put the package inside.

So, certainly, speak your mind about what matters most to you. But don't presume that your opinion applies to others.

rosegirl
your last sentence suggests that others are generalizing. I think they are personalizing as are you
it is clear to me that the protean manifestations of MS are individual. I think that designing the measures is quite difficult because there are so many different important symptoms

pklittle wrote:Algis, the whole body scan is fascinating!!!!

I have been wondering, if there can be malformations in the jugulars and that other vein that starts with an "a" (I know, I would flunk your test Dr S), are there possibly problematic veins in other parts of the body? Why just hone in on the neck area?

if no one had symptoms of ccsvi and MS just caused lesions without manifestations, NO ONE WOULD CARE

so there are other critical veins and they also have manifestations that cause serious problems and we do study them and thy to treat them.

Budd Chiari is a malformation of the veins draining the liver.
May Thurner syndrome is a malforation of the iliac veins. there are others too

i focus in on the neck because i have decided to focus on ccsvi and ms

bestadmom wrote:Rosegirl, I'm with you on the mobility issues. I've progressed to be in chair full time, but have no cognitive, spasticity, sensory, or fatigue issues.

We are as unique as snowflakes and it is going to be difficult to find one common symptom to measure. Maybe freezing, purple feet?

nope

that is why we will have to measure all the symptoms. I never meant to suggest that we should only study one or two symptoms

we will need to see all of them and see which ones respond

ozarkcanoer wrote:bestadmom,

No purple hands or feet for me !!! I hate the number of lesions and the number of relapses as a measure of disease progression. I have 40 lesions and NO relapses but I have a diagnosis of RRMS. But I do have fatigue and cog-fog and headache. And I'm not in a wheelchair. I can walk just fine. We can't find any common symptoms.

ozarkcanoer

true
but i believe (not know) you all have ccsvi

Johnson wrote:

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.

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 could have been a healthy control, with stenosis, on the Ides of March, 1993, but that very night, my optic neuritis started, and on the morning of the 16th, I was blind in one eye, and couldn't stop from falling over. I had "MS".

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

i completely agree, especially as there is a chromosomal abnormality

drsclafani wrote: There are other techniques to measure cerebral blood flow that might be more valuable. putting probes in jugular veins might be a potential cause of narrowing

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

drsclafani wrote:
this is one rotten disease

It means a great deal to have a Dr acknowledge this. I have a great neuro! but I think seeing this in most of his patients, he has had to distance himself from feeling any empathy for what we truly deal with. He's been working to make life be as best as he can, with what he has known. Luckily, he's open to understanding new developments and perhaps the two of you will meet if Michelle gets him involved with the CCSVI Alliance, as she would like to. Anyway. As great as he has been, I don't think I've ever heard him say anything like this simple statement you have made. But that simple statement makes me feel as though you are understanding and you would like to change that for all of us, truly change it!

I've had the liberation procedure with Dr. Bonn. Almost a month now. It has made significant improvements in my quality of life. Especially with fatigue and my ability to sleep on my own. It has not done much with cognition. Which, as others have expressed, this is very difficult to deal with. I knew that was a long shot, knew I have had scar damage, but wouldn't life be grand if it slowly improved since there is improvement in the rest of my health?! Here is something I wrote up that describes the cognitive hell I deal with (and for someone with a high IQ, this makes things very frustrating, especially when people try to convince me there is nothing wrong with me because I'm so smart):

***
Worst:
Cognitive impairment
-can't stay on top of anything
-easily confused
-time spacial relationships affected
-lack of organizational ability
-can't read books anymore, can only read in short bits and constantly have to re-read things
-constantly lose what I'm trying to do, ie. can't stay on task
-can't follow a conversation
-wrong things come out of mouth instead of what I'm trying to talk about, something in my field of vision may come out instead
-difficulty writing what I have on my mind
-get fixated on things and even if I want to stop, I can't
-the more going on around me, the harder it is to process what I'm observing
-easily distracted
-can't find the words
-memory recall is crap (so many memories just don't come to mind)
-things I know I should know how to do, everyday things, are sometimes lost on me
-Names, HA forget about it!!!
I'm sure there are more cognitive things but i can't recall right now... lol
Fatigue
- unbelievable beyond tired, zero energy, life sucked out of me tired
Insomnia
- sleep trigger all messed up, inability to fall to sleep regardless of how tired I am, sometimes even ambien does nothing for the sleep but get real trippy!

I just have to say this... I generally make the most out of life and don't focus on what is wrong in life. But there are very few people who understand what it is like for someone with a high IQ to deal with cognitive impairment. I'm sure some of you can. 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. I used to be able to use strategies to help with issues but I lost the ability to maintain strategies 6 years ago. I haven't been able to help my son with homework since he was in the 3rd grade. Frustrating to say the very least. Many times I talk of my MS that I'm not as bad as many others, like my cousin. I actually say I'm lucky. I say this simply because I can walk without major difficulty, I'm not in a wheelchair, I can use both arms, legs, hands, feet... But as the words come out of my mouth, or I type those very words, there is always a part of me that asks myself, am I really not as bad off. Am I really lucky? I'm losing some of the essence of what makes me Me. And it shows through, how smart I am, which always triggers someone telling me, "but you are still smart, your still with it, I don't see any cognitive impairment." having it not be a problem some of the time, doesn't make it any less difficult when it is a problem. Sometimes hearing such statements makes me feel worse. It lets me know that someone doesn't understand. And you have no idea, well all of you might, how many of those close to me say this sort of thing all the time! I have people get argumentative with me or tell me I'm being hard on myself. Quite the contrary, I'm easy on myself, I have to be. But if you ask me what I deal with, I will tell you.
***

drsclafani wrote: 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

I'm sure there must be, but would that be kosher? Don't we need to have controls matched by age, sex and so on so that our results can be broken down by age and sex just as we are?

I'll see what I can find as far as published results.

drsclafani wrote:

Johnson wrote:

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.

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.

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

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.

Brilliant.

Squeakycat wrote:

drsclafani wrote:

Johnson wrote: 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.

Squeakycat,

I don't think I am being too hard on them. A flawed study is a flawed study, as far as I am concerned.

To me (because what I think is so important) a relative means a blood relative. Perhaps a brother or sister or Grandma or cousin, but related by a DNA connection. I have dismissed BNAC (because I am such a great scientist) because of the vague aspects of what we know about that study. I think there is something weird about it (and dammit! my opinion is gold)

thirdday wrote: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?

Dr S. The last thing I want to do is waste your time but I got to ask you to listen to this its a radio Interview with the great Dr. Freedmen the head of neurology I believe in Canada. Dr. Freedmen has to be the biggest Skeptic for CCSVI It is remarkable what kind of trash that comes out of his mouth in-regards to scanning,treatment, investigation, people dieing from treatment, and so on


The best part is he tries to explain what Drs in your field should be doing
Thats like a car Mechanic (DR Freedmen) trying to tell a Airplane Mechanic ( Dr. S) the best way to change the brakes on the plane.

He speaks about one person dying yet does not even mention the fact the Tysabri has killed well over 50 people giving them PML

So by all-means DR. S here is the link to the site with the audio link on the right hand side
http://www.am770chqr.com/Blogs/RobBreak ... D=10111605


Hey Dr. S thanks ahead of time for listen to it I am far from a Doctor but will give you this small piece of advice take small Deep breaths while listening to his rants haha Lol

girlgeek33 wrote:

drsclafani wrote:
this is one rotten disease

It means a great deal to have a Dr acknowledge this. I have a great neuro! but I think seeing this in most of his patients, he has had to distance himself from feeling any empathy for what we truly deal with. He's been working to make life be as best as he can, with what he has known. Luckily, he's open to understanding new developments and perhaps the two of you will meet if Michelle gets him involved with the CCSVI Alliance, as she would like to. Anyway. As great as he has been, I don't think I've ever heard him say anything like this simple statement you have made. But that simple statement makes me feel as though you are understanding and you would like to change that for all of us, truly change it!

I've had the liberation procedure with Dr. Bonn. Almost a month now. It has made significant improvements in my quality of life. Especially with fatigue and my ability to sleep on my own. It has not done much with cognition. Which, as others have expressed, this is very difficult to deal with. I knew that was a long shot, knew I have had scar damage, but wouldn't life be grand if it slowly improved since there is improvement in the rest of my health?! Here is something I wrote up that describes the cognitive hell I deal with (and for someone with a high IQ, this makes things very frustrating, especially when people try to convince me there is nothing wrong with me because I'm so smart):

***
Worst:
Cognitive impairment
-can't stay on top of anything
-easily confused
-time spacial relationships affected
-lack of organizational ability
-can't read books anymore, can only read in short bits and constantly have to re-read things
-constantly lose what I'm trying to do, ie. can't stay on task
-can't follow a conversation
-wrong things come out of mouth instead of what I'm trying to talk about, something in my field of vision may come out instead
-difficulty writing what I have on my mind
-get fixated on things and even if I want to stop, I can't
-the more going on around me, the harder it is to process what I'm observing
-easily distracted
-can't find the words
-memory recall is crap (so many memories just don't come to mind)
-things I know I should know how to do, everyday things, are sometimes lost on me
-Names, HA forget about it!!!
I'm sure there are more cognitive things but i can't recall right now... lol
Fatigue
- unbelievable beyond tired, zero energy, life sucked out of me tired
Insomnia
- sleep trigger all messed up, inability to fall to sleep regardless of how tired I am, sometimes even ambien does nothing for the sleep but get real trippy!

I just have to say this... I generally make the most out of life and don't focus on what is wrong in life. But there are very few people who understand what it is like for someone with a high IQ to deal with cognitive impairment. I'm sure some of you can. 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. I used to be able to use strategies to help with issues but I lost the ability to maintain strategies 6 years ago. I haven't been able to help my son with homework since he was in the 3rd grade. Frustrating to say the very least. Many times I talk of my MS that I'm not as bad as many others, like my cousin. I actually say I'm lucky. I say this simply because I can walk without major difficulty, I'm not in a wheelchair, I can use both arms, legs, hands, feet... But as the words come out of my mouth, or I type those very words, there is always a part of me that asks myself, am I really not as bad off. Am I really lucky? I'm losing some of the essence of what makes me Me. And it shows through, how smart I am, which always triggers someone telling me, "but you are still smart, your still with it, I don't see any cognitive impairment." having it not be a problem some of the time, doesn't make it any less difficult when it is a problem. Sometimes hearing such statements makes me feel worse. It lets me know that someone doesn't understand. And you have no idea, well all of you might, how many of those close to me say this sort of thing all the time! I have people get argumentative with me or tell me I'm being hard on myself. Quite the contrary, I'm easy on myself, I have to be. But if you ask me what I deal with, I will tell you.
***

Thank you so much for sharing this. My darling man also has cognitive impairment. He has a very high IQ and, I believe, he feels that the cognitive aspects are the worst part of the disease for him. Although, physically, he's rapidly deteriorating, as well (He has PPMS).

I really appreciate the insight I got by reading what you wrote. He doesn't always tell me what he's going through. I always want to know but I understand why he doesn't.