This Is MS Multiple Sclerosis Community: Knowledge & Support

Not directed at anyone in particular. Just fishing for ideas to help me develop a theory that can stop my brain from looping.

If it's any comfort, EVERYONE else's brain is looping.

That's what has always been so disconcerting about MS, is that nothing seems to make sense and things will sometimes seem to make sense in one way but doesn't seem to make sense when viewed from a different angle. Obviously, for something to REALLY be sensible it has to "fit" no matter how you look at it ie.. 2+3=5, 3+2=5, 5-3=2

I'm one of those people with unshakable faith that MS does make sense but that between our not being able to view anything directly and having to look "through" plasticity's heroic efforts to fix things so that we don't notice them......what we do see has always caused us to draw a lot of nonsensical conclusions like "silent lesions" and our putting too much veracity into what we've defined as the different phases of MS.

I think what we see in the earlier years of MS, the "relapsing/remitting" phase has always TOTALLY thrown researchers off in trying to figure out what MS is as a whole.

Evidently you have but I've never heard that childhood MS is almost exclusively RR. I don't know what you mean by "Is it just plasticity?"

It's kind of hard to explain my take on the situation other than to say that (contrary to common thought) EVERYONE goes through RRMS and it's only accurate description is that it's the earliest stages with mostly inflammation driven symptoms. Since children are young it stands to reason that RRMS what would mostly be seen in them and that it would be almost unimaginable to see true "SPMS" or "PPMS" in someone so young.

First, information based on such small numbers as familial clusters is of no real value over and above being interesting....brain candy.

With that in mind, I think the evidence shows that there is no literally such a thing as "PPMS" and that it is always SPMS in which the rate of disease progression was such that plasticity was able to mask the entire RRMS phase. In other words, MS that isn't diagnosed until the SPMS phase is mistakenly considered PPMS. With that in mind you are referring to nothing more than a sensible situation.

Despite what some people think and what I have to honor as "alternative" opinions, there is no logical reason to think that MS doesn't involve the immune system. At this point the ball is the hands of others to prove that the immune system isn't involved.

I don't know what that means.

It's been a while and, right or wrong, after reading about that situation I remember coming to the conclusion that the intense heat of the sun exacerbated her symptoms to the point that she couldn't save herself and likely died of heat stroke or something similar.

Unfortunate and unusual but not diabolical and not cause to think that there is something drastically different about the system of someone with MS that we aren't aware of..........Lord knows there is, but that situation didn't shed light on it.

Bob

Thanks Bob,

What I meant by initiator promotor is that maybe MS is just one disease. Some event (infections- bacterial, viral, etc. + genetic predisposition starts the process) and any number of things stress, hormones, severe oxidative load or the same viruses or bacteria that initiated the immunological process, promote it in different ways in different people. This doesn't fit, though, with your theory that everyone starts out with the RR form and that plasticity masks it in some until they become PPMS. Though, and I am sure you have explained this already, in PPMS (I'm sure I am wrong here) isn't it common not to see evidence of demyleinated plaques seen RRMS? Can someone be diagnosed with RRMS without evidence of active lesions? Thanks again for humoring me.

I think these are meant for all, Bob....they're terrific questions, Sandy. Can I play???


That's what I think, too, Momma Sandy. It's still early in the disease process. Although my hubby wasn't dx until he was 43, we can look back at 20 years of various "symptoms" we now know were his MS.


Docs are more on the "lookout" for MS once it's known to be in the family. Alan may have had symptoms prior to his dx. His son's dx was more obvious. Hindsight is 20/20.


Since I am vascular girl, I've wrestled with this question. Cytoxin and cyclophoshamide affect coagulation...here's a couple of studies.


http://cat.inist.fr/?aModele=afficheN&cpsidt=1233551


http://www.ncbi.nlm.nih.gov/pubmed/2510313

My belief is that there is a factor in MS patient's blood related to the anticadiolipin antibodies and fibrinogen levels which responds to cyclophosphamide treatment. Doctors are finding more connections between MS and a faulty endothelial layer of cells in the vasculature, but it's a slow, microscopic process. Hope that makes a bit'o sense!
AC

_________________
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS

As you know, there is a TON of information out there, not all the same, but I've not read that particular distinction.

As always I can only say it like I see it but that's a great way to describe how I see MS and considering the complete lack of conclusive proof I like to think that I keep logic on my side.

Although other things must surely be diagnosed as MS/vice versa, I DO think there is only one MS. Of course that leaves a drastic range of progression rates to a degree that I've never seen satisfactorily explained and I can't begin to explain.

It seems to me that things like the effects of plasticity and things like the "waxing and waning" of viruses/bacteria explain a degree of variation, but some people are hammered with MS to the point of death in a few years and at the other end of the spectrum, some live their lives unaware they had MS. That is an unexplained degree of variation.

Bob

Hi AC,
I think you worded it that way for the sake of others but obviously cytoxan and cyclophosphamide are one and the same.

If your coagulation thoughts were valid it doesn't seem that there would be such blatantly obvious differences between the use of cyclophosphamide at suppression dosage and the little bit higher over the course of four days in the attempt of total ablation.

If your coagulation thoughts were valid it's almost certain that other drugs affecting coagulation would have shown drastic effects on people with MS along the way when considering how commonly used those drugs are in people with MS.

Although an entirely different mechanism is responsible, it's used toward the same end and you evidently also have some reason to feel that Campath has some effect on coagulation?

Bob

Hey Bob...
You're right. It's more complicated than simple coagulation issues, or warfarin would cure MS. And it doesn't. Both revimmune and campath aren't chemo (although they were originally used for cancer) they're more specifically geared...campath goes after CD52, the protein on lymphocytes, and a side effect of using it is hypotension. I read a study of a guy who's blood wouldn't clot after getting an infusion pre-op (of course, I can't find it now that I need it...) I think there's a similar method behind cytoxan, in that it decreases anticardolipin antibodies, proteins and fibrinogen. And, of course, getting rid of errant t and b cells in the CNS will certainly curtail destruction, at least temporarily...but it hasn't "cured" MS.

I really do believe cerebrospinal venous insufficiency, reflux, and endothelial dysfunction are behind MS, and that continued testing will show how this manifests physically in the blood and veins.

Sandy mentions her circular brain loops....this is why I kept coming back to the blood. We need to understand why the blood brain barrier is broken. Mopping up t and b cells first is like mopping up a flooded home. We need to stop the incoming waters before we get out the mop and bucket, or we're just wasting our time. Because the water keeps pouring in. I think venous pressure creates the breakdown.

And if MS is purely immune, than why does the Swank/best bet diet, meditation, lack of stress, breastfeeding, antioxidants, exercise, LDN,(and lots of other hypotension-creating measures) help so many to achieve remission?
AC
I'm sorry you were highjacked, Bob. I shouldn't have gone there....back to loss of evolutionary immune controls ASAP!

_________________
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS

Hi AC,
Not trying to set you up on this one but I've always been interested in the various definitions of the word "cure" and I find it interesting that you seem so adamant in your response. Mind...I'm not arguing one way or the other but I'm interested to know why you seem so adamant that it isn't the cure.

Of course the bottom line is that in this area no conclusive evidence exists either way, neither or us can win this one but common sense leans toward a continued acceptance of what most people have always found obvious....that "healthy" habits can be beneficial without actually directly modifying or "reversing" a disease process. If that weren't true it doesn't seem that the concept of "healthy" could have developed among well people in the first place.....in other words, well people don't have to modify a disease process but they can feel better and be demonstrably "healthier" by utilizing "healthy" habits.

Bob

Bob,
To me, a "cure" would stop MS disease progression and continued axonal damage. I don't think there's been one drug/treatment which has done this in 100% of the MS patients tested. Some treatments achieve remission for awhile, some stop inflammation, and there have been a few folks apparently "cured" by stem cell therapies and certain drugs- but then it doesn't work for everyone. Why? Either everybody's MS is unique, or we haven't figured out the common denominator yet. We don't have a cure for cancer, MS or the common cold. We have treatments.

Also, I don't think LDN or the best bet diet would be necessary to establish a "healthy" lifestyle...but both do encourage a hypotensive lifestyle.
AC
Now, really....back to your thread, because I believe you have something here! The hookworm is noted for its serum iron-depleting and anticoagulative properties!
http://www.jbc.org/cgi/content/abstract/277/8/6223

_________________
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS

Hi AC,
Thanks for playing along. Even if I were convinced that the "cure" is here now, it would take time....our lifetimes?? To prove that MS was eliminated for good, so for that reason alone I don't think we'll ever get to use the word "cure" with confidence.

As a sidenote, I think your definition of "cure" is reasonable although I find it a little curious that you include the need to be 100% effective 100% of the time.....but the only "correct" answer is each of our opinions!

Over the years I've thought about that one a lot....in fact I've dwelled on it and I think you're right. Through the years we've had medical advances....big ones, but if someone rigidly adheres to the definition of "cure" as being elimination or reversal of the original cause, "cures" are almost unheard of. The vitamin deficiency diseases.....and I'm not sure that we could even consider mending broken bones as being cured when you consider that we mend them but we don't reverse or eliminate the original cause.

I haven't had enough time to think about it so not to concede anything just yet, but now that you mention it, AT LEAST most any external parasite which drinks our blood utilizes natural anti-coagulants and that is just one of the benefits of the medical leeches Detlev Goj's earlier start up company sold before he started Ovamed and started selling the T suis/swine whipworm.

Bob

I'll have to think about that, AC. I suppose it is possible. Would that account for a prolonged remission of 5 years or more for some after Revimmune?
Thank you so much for your input. I am completely out of my league with you guys!!! The BBB involvement seems to be have been a low priority for researchers in the past. But I think that has to be tackled before we figure out the etiology of how we have previously characterized MS.

My mind is boggled right now just trying to figure out the right amount of sencha tea to drink to get the right dose fo egcg (probably spelled that wrong). Took me hours to research the best tea and the right way to brew it!!

Sandy