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
Adhesion molecules and white cells activation
T cell migration-infiltration
Local iron overload
Urine haemosiderin test
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!
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