Cure in our lifetime?

If it's on your mind and it has to do with multiple sclerosis in any way, post it here.

Cure in our lifetime?

Postby lionheart » Tue Feb 24, 2009 3:13 am

Hi guys, do you believe that cure will be found in our lifetime?

As a rule, I am pretty much optimistic, not that I'm thinking of a cure, but just not going too deep in the desease, living for today and enjoying my life to the full.
But these days I feel really down for some reason, reading about progressions, quick or slow they all lead to one and the same...This makes me think of the future and realize the inevitable outcome...

Yet no one can say what the future holds out for them...could be better, could be worse, only God knows.

Still, I do need an optimistic helping hand today, pls..
User avatar
lionheart
Family Member
 
Posts: 60
Joined: Sat Jan 10, 2009 4:00 pm
Location: Bulgaria

Advertisement

Postby jimmylegs » Tue Feb 24, 2009 6:17 am

you'll be all right lionheart. we'll all so different, and it's NOT all leading to the same bad end. you have some control over this, we all do, might not be as much as we would like, but still. take your b-complex and your vitamin D today and keep your chin up!
my approach: no meds so far - just nutrient-dense anti-inflammatory whole foods, and supplements where needed
info: www.whfoods.com, www.nutritiondata.com
User avatar
jimmylegs
Volunteer Moderator
 
Posts: 8944
Joined: Sat Mar 11, 2006 4:00 pm

Re: Cure in our lifetime?

Postby HarryZ » Tue Feb 24, 2009 6:37 am

lionheart wrote:Hi guys, do you believe that cure will be found in our lifetime?


A very difficult question to answer..to say the least!

Despite some 60 years of MS research, the experts still don't have a cause and certainly nothing even close resembling a cure. Unfortunately, I think a lot of this research was directed at providing long term, expensive drugs and not looking into what causes the disease to begin in the first place. That has changed in the last 10 years or so but there is a lot of catching up to do.

About 6 years ago, a neuro told me that the big breakthrough will likely come when a researcher stumbles upon something by accident. Hopefully, that will come sooner than later.

Harry
User avatar
HarryZ
Family Elder
 
Posts: 2441
Joined: Tue May 25, 2004 3:00 pm
Location: London, ON, Canada

Postby scorpion » Tue Feb 24, 2009 7:56 am

My answer would be no but... I think that there are therapies out there that will provide everyone with a better quality of life (stem cells, better drugs, etc.) Maybe even something to halt progression in the next five years?? From what I read people directly involved in research are a bit more optimistic than us which may be a good sign but who knows. My wife is a researcher (nano biology) and feels very strongly that there will be MAJOR advances using stem cells to treat many different disorders including MS in the next five years.
User avatar
scorpion
Family Elder
 
Posts: 1323
Joined: Wed Nov 05, 2008 4:00 pm

Postby MaggieMae » Tue Feb 24, 2009 8:09 am

We have been dealing with this dreadful disease in our family since 1974. I am no longer hopeful that there will be a cure in our lifetime. I can remember my husband's doctor saying "in ten years". That never happended. When I first started reading articles and research I thought there was hope. But everything that seems promising, falls apart eventually. We take one day at a time. Yes, he does take his vitamins, and I encourage all the young people (especiallly) in our family to take Vitamin D.

At first we thought he would be in a wheel chair in a couple of years, then he always bounced back with treatments and his doctor said he's going be one of the lucky ones. But, it gets you. You start to lose the ability to walk. Ever so slowly it robs you of your health. No more attacks, just slow disability.

I have no answers. We always felt that you have to be aggressive with treatment because the disease is doing damage even when you can't see it. But, I'm not sure of anything anymore. Just keep trying our best.
User avatar
MaggieMae
Family Elder
 
Posts: 380
Joined: Wed May 23, 2007 3:00 pm
Location: Pennsylvania

Postby cheerleader » Tue Feb 24, 2009 8:43 am

Lion...
I know I'm just a newbie/rose-colored glasses gal, but I believe we'll see MS "understood" in the next few years. And that may lead to the cure. I think Dr. Zamboni of the Un. of Ferrera is one of the folks who "stumbled" upon a new way of looking at MS, by scanning the venous system. Dr. Zlocovic at the Un. of Rochester is finding new revelations by studying cerebral bloodflow. There are researchers outside of the big pharmaceutical world, who are approaching MS from a novel way...and are finding new things everyday. High powered MRIs like the 7 and 9 tesla are showing inflamed blood vessels before lesions ever form, and giving researchers a new model of MS progression.

Hold fast! Take your supps, move your body everyday, try to find activities which bring you joy and remain hopeful and proactive. And the rose-colored glasses really do help...
AC
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
User avatar
cheerleader
Family Elder
 
Posts: 5015
Joined: Mon Sep 10, 2007 3:00 pm
Location: southern California

Postby jimmylegs » Tue Feb 24, 2009 9:07 am

lion i hope you don't think i'm suggesting that b-complex and d3 are today's cure for ms. :roll: could help you get out of a blue funk tho, not to mention some form of exercise :) good luck hope you feel better soon
my approach: no meds so far - just nutrient-dense anti-inflammatory whole foods, and supplements where needed
info: www.whfoods.com, www.nutritiondata.com
User avatar
jimmylegs
Volunteer Moderator
 
Posts: 8944
Joined: Sat Mar 11, 2006 4:00 pm

Postby mrhodes40 » Tue Feb 24, 2009 9:33 am

Well, I agree with everything everyone said here. I've had MS for 18 years and in the first years I believed that we were really close to an answer. That turned out to be a fairy story. But there's some real positive too! If Zamboni's right there may be a cure in a year or two.

The thing I think people don't realize perhaps is that the expectations for EVERY SINGLE THING that came out were exactly as it is for today's "wonder treatments". It is only with very long time that eventually it becomes known that in fact, gee, uh, it didn't work---again.

What I find amazing is that instead of going "let's look another direction", they go "I know! lets zap the immune system harder".

When you realize that it is well known people with AIDS and MS have their MS progress as usual, no stopping it at all, and you realize that AIDS kills people from lack of immunity, you realize that we should go back to the drawing board.

But HArry said
a neuro told me that the big breakthrough will likely come when a researcher stumbles upon something by accident.


Harry have you seen the Zamboni stuff? He is a vascular doctor, his specialty is vascular surgery and he is a professor at University of Ferrera who does research there. His wife has MS.

When looking at dopplers on an MS patient she coughed and he was surprised to see reflux on the doppler. That shouldn't happen and it was the veins that come from the head they were looking at.

From there it was noted by looking at published research that MS lesions have the same cytokine profile, MMP9, iron, etc as venous ulcers in the lower leg, which can be caused by a femoral stricture and reflux in the leg.
Being a vascular specialist ( as opposed to a neuro) this had meaning for Dr Zamboni, and he developed a hypothesis that MS is caused by these venous abnormalities.
From Zamboni "The Big Idea: iron dependant inflammation in MS" (I own a copy)
Table 1 Common findings of the inflammatory chain in CVD and MS
Finding CVD References Multiple sclerosis References
Altered venous haemodynamics
Perivenous inflammation
erythrocyte extra-vasation
Haemosiderin deposits
Adhesion molecules and white cells activation
Macrophage migration-infiltration
T cell migration-infiltration
Iron laden-macrophage
MMPs hyper-activation
TIMPs hypo-expression
Local iron overload
Urine haemosiderin test
HFE mutation
Fibrin cuff (on going reparative process)


Note about the chart: : you see that everything that is listed is known to be true of venous ulcers AND MS lesions, in the real chart, which I was unable to paste in, there are references for each and every one of those things; it's not like Zamboni is making this theory from now where, it comes from known research. The only thing not known is the first; the altered haemodynamics. THAT's what his research on those 750 people set out to show. IMHO, he showed it well.

They have of course now had roughly 750 people go through the clinic in 3 blinded controlled research studies and it turned out that all the people with MS had reflux and abnormal doppler readings in 2 or more findings where the other people, whether they had other neurological disease or other vascular or disease or were older normal people, had no more than one abnormal reading

This is to me the most exciting new research along the MS lines to come along in a long time: it's novel and a completely new direction for research.

People who've been in the autoimmune camp find the whole notion hard to get their minds around, the biggest question being 'Yeah, but why does revimmune/campath/tysabri etc work? He can't be right.'

Look at that chart /list, most of those things will be impacted by knocking out the immune system becasue they are all inflammatory markers dependant on immune activation to happen, that's why it seems to help.

How do they go around telling us that "revimmune worked"?

PRIMARILY because the main criteria they use for "did it work" is whether or not new inflammation and GD enhancement shows up, well, when the immune system has been hamstrung it can't do that even if it wants to/needs to when degeneration is happening in that area.

I will add a chunk from another paper on autologous stem cell transplants that shows that after such treatments people STILL show degeneration of brain tissue even though the inflammation is gone. This comment is from a pathologist who austopsied brain tissue after people died post ASCT:
Autopsy samples from these patients revealed that in
all cases there was an almost complete absence of inflammatory
markers in the brain, notably of T cells. On
the other hand, there was significant staining for amyloid
precursor protein (APP) inclusions, a marker of
acute axonal damage (Fig. 5). This suggested that even
though inflammation had been abolished, neurodegeneration
was still proceeding in the brains of these patients,
and thus that neurodegeneration was not a direct
consequence, at least in the short-term,of inflammatory
damage to the nervous system.

from Wolfgang Bruck "Inflammatory Demyelination is not central to the pathogenesis of multiple sclerosis" (I own a copy)

In the end, we all have a right to feel ripped off by what this disease does and what it takes from us, and IMHO it is justified to be mad about the lack of success in research so far, but it is not without hope!

Let's hope this new work is the key to a new direction for research to go and that it ends up being fruitful.

Hey I am pretty disabled myself, I'm excited for some of the stem cell work to result in possible improvements down the road as well. Some people who have had strokes have had mesenchymal stem cells and they have helped the patients recover some function even 6 years post stroke. That whole area may result in some real benefits too...........

There are lots of people with strokes and there's lots of regenerative research there we will benefit from.

Keep your chin up and be as healthy as you can so you can be as ready as possible for what does show up!
marie
The rest of the Zamboni conversation for those not having seen it is in the CCVI thread http://www.thisisms.com/ftopict-6488.html

Edited to add link to CCVI thread where much of this research is linked
Last edited by mrhodes40 on Tue Feb 24, 2009 6:50 pm, edited 2 times in total.
User avatar
mrhodes40
Family Elder
 
Posts: 2066
Joined: Thu Sep 23, 2004 3:00 pm
Location: USA

Postby mrhodes40 » Tue Feb 24, 2009 10:23 am

Hi PK,
The link is to a TIMS thread that has all the research in it, not directly to a single research page. There are many links to actual research papers in that thread. I have summarized the idea here, but the thread itself is where you want to be if you want to learn about it
marie
User avatar
mrhodes40
Family Elder
 
Posts: 2066
Joined: Thu Sep 23, 2004 3:00 pm
Location: USA

Postby mrhodes40 » Tue Feb 24, 2009 11:15 am

Hi PK,
It might seem so on first glance, but no, that is wrong. Your blood pressure is the pressure in your ARTERIES which is a reading of how well your heart pumps. This is in the veins. The only way to see how the veins are doing pressure wise is with doppler/ultrasound exams.

People with venous ulcers do not all have "hypertension and cardiovascular issues" either. The two systems are separated by the capillary bed and may have concurrent disease or may not.

There is no conflict there at all. The Zamboni work is very hopeful!
User avatar
mrhodes40
Family Elder
 
Posts: 2066
Joined: Thu Sep 23, 2004 3:00 pm
Location: USA

Postby cheerleader » Tue Feb 24, 2009 11:40 am

Petakitty wrote:interesting theory but if that were true, we would all have hypertension and other cardiovascular issues.


Marie (mrhodes) is right, she pretty much always is...read every word she writes (you can skip mine, I'm just a layperson)...she's a terrific resource as a medical professional.

Venous refers to veins. Veins return the deoxyginated blood back to the heart. This has nothing to do with heart issues. Dr. Zamboni's work is not based in "theory"...he's found venous insufficiency (blockage in veins returning blood from the brain to the heart in the jugular and azygous veins) in EVERY MS patient he's tested, and is now performing endovascular surgery to return normal venous pressure. But he is not alone in pursuing the vascular connection and thinking outside the current MS box. I believe this is where our answers will come from.
AC
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
User avatar
cheerleader
Family Elder
 
Posts: 5015
Joined: Mon Sep 10, 2007 3:00 pm
Location: southern California

Next

Return to General Discussion

 


  • Related topics
    Replies
    Views
    Last post

Who is online

Users browsing this forum: No registered users