Cure in our lifetime?

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

Postby MaggieMae » Wed Feb 25, 2009 7:23 am

You are all out of my league here. I don't want to sound "too stupid" but tell me your opinions. In readng about Dr. Z and this vascular issue, two people in our family have MS, but another has Hughes Syndrome (of the veins not arteries). I think Hughes Syndrome is listed as an autoimmune disease. Could there be some connection?
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Postby cheerleader » Wed Feb 25, 2009 7:59 am

MaggieMae wrote:You are all out of my league here. I don't want to sound "too stupid" but tell me your opinions. In readng about Dr. Z and this vascular issue, two people in our family have MS, but another has Hughes Syndrome (of the veins not arteries). I think Hughes Syndrome is listed as an autoimmune disease. Could there be some connection?


Maggie....you don't sound stupid. This is a terrific question, maybe one to ask your family doctors. Hughes Syndrome is a diagnosis differential for MS. It is a disease of coagulation, created by antiphosipholid antibodies. The immune system attacks certain proteins in the blood, and the blood thickens, or hypercoagulates. Clots can form, circulation is hampered, stokes can happen. Some people are in danger of DVT or deep vein thrombosis. If you search the name "misdiagnosed" on the forums, you'll find the story of a gal who went many years with an MS diagnosis before she learned she had Hughes Syndrome.

I'm not saying your MS is Hughes, only rigorous testing can prove this. My husband had hypercoagualating blood, petechiae (blood spots) on his calves and other issues with his blood. This is what set me on this route. He tested negative for antiphospholipid antibodies, but there was still something going on. My belief is that there are antibodies to proteins not yet detected in MS blood, which create a similar situation...but this is just a guess. I think Dr. Zamboni's new doppler tests are finding evidence of how this hypercoagulation manifests in MS. Time will tell. Good thing for us, scientific research isn't dependent on what we "believe."
best,
AC
Last edited by cheerleader on Wed Feb 25, 2009 8:38 am, edited 1 time in total.
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby notasperfectasyou » Wed Feb 25, 2009 8:32 am

Thanks Bob,
I've been but I'm not a student. I had a boss once who would spend a week every summer walking battlefields. I've spent at least 10 hours of lunches listening to the importance of the height of the wall at Pickett's charge. I'm glad the analogy worked, it just popped up as I was thinking.

Sometimes I think we ought to be working collectively on a unified theory for MS here at TIMS. Ken
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Postby gainsbourg » Wed Feb 25, 2009 9:00 am

Lr1234 said:
I don't know if they will ever find a "cure" for MS but I certainly think they will find ways of stopping its progression and maybe even be able to reverse some of the damage done.


Ever?

Actually I have to agree. Doctors won't find the cure (or cause) of MS because they have been looking up the wrong tree for 150 years. They more or less dismiss outright the idea that the brain (or rather the whole CNS) can be damaged by the complex workings of the mind.

As most of you know, I believe that MS is most likely a disease where the brain damages itself. Stress laden thoughts, and other cognitive processes, weakening or damaging the very tissue from which they originate!:oops:

At the very least, I believe the mind will eventually be found to be as crucial a factor in the development of the disease as it appears to be in relapses.



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Last edited by gainsbourg on Wed Feb 25, 2009 2:10 pm, edited 1 time in total.
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Postby mrhodes40 » Wed Feb 25, 2009 10:10 am

Mammasan said
I am completely on the fence as to whether it is a cause or result of the MS, but I am very excited to see what comes of your endeavors.


I was there when I started looking at this too, it COULD be secondary, but it does not seem to me likely now. But it matters not at all what I think; science will out the answer as long as people look in that area. I'm just glad they hae a new place to look.

PK said

But it's nice to dream that it is the cause and so easy to fix for a little while don't you think?

I am still pursuing chemo/SCT.


Right. I would not make treatment decisions based on the Zamboni work, it is too new and unproven yet, so I agree that pursuing what seems right to you, what is available, knowing what you know now, with input from your doc and family is the right thing to do based on where you are in your disease and what is generally standard of practice for MS treatment. No doubt if this is proven it will be offered to you no matter what you did before.

ANd who is to say the the eventual best treatment won't include both immune modulating approaches AND the endovascular treatment? It might.

But it is fun to think about! I hope he's right;
:D
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Postby robbie » Wed Feb 25, 2009 11:10 am

they have been looking up the wrong tree for 150 years.

Do you ever think that doctors might realize this if it is so obvious weather it’s this approach or one of the many others and change their way of thinking?
Had ms for over 19 years now.
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Postby sou » Wed Feb 25, 2009 12:37 pm

I will repeat myself. There won't be a cure as long as MS is autoimmune.

Cure in our lifetime? It will have to be a veeeeeeeery veeeeeeeeeeery long life. Unless infants start contracting MS, too. Anyway, tell me of a disease that has been cured in the last 50 years and, as a bonus, a disease a neurologist can cure, let's say, in the last 500 years. Add as many '0's as you like.

Personally, I don't want to live that much to see a cure. On the contrary, I would be more than happy if I slept and didn't wake up tomorrow.

sou
Shortest joke: "We may not be able to cure MS but we can manage its symptoms."
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Postby Lyon » Wed Feb 25, 2009 12:44 pm

Despite my personal skeptisism, I think it's wonderful that people have something they are hopeful and excited about to pass the time.
Petakitty wrote:I believe it's already been ruled out as the cause of MS. thats the impression got from my neuro. But then he is Tysabri crazy. :roll:
My urge is to agree with you but in the interest of total open mindedness, medicine still can't explain or control MS and I'm convinced that researchers missed or didn't check some things well enough the first time around.......I'm afraid to consider ANYTHING "ruled out"despite evidence which seems to show otherwise.
BMJ 2002;325:1128 ( 16 November )
Editorials
Infection as a cause of multiple sclerosis

Theories abound because no one knows the answers yet

It is difficult to think of an aetiological theory that has not been suggested to explain multiple sclerosis. Disconcertingly, however, many of the aetiological questions asked over 150 years ago are still unanswered.1 Is the disease due to a vascular defect as initially suggested by Rindfleisch in 1863, who noted a blood vessel in the centre of each plaque, or is it a defect in the glial tissue as argued by Charcot in 1868 after he viewed and drew the glial and nerve changes under his microscope? Oppenheim was certain that multiple sclerosis was caused by environmental toxins. In the middle of the 20th century interest centred around the possibility that it was an immunological disease and, more recently, a genetic disease.

Perhaps the most enduring questions concern a potential infectious agent. In 1894 Pierre Marie, a former student of Charcot, argued strongly that infection was the cause of multiple sclerosis and that those who disagreed had not read his papers. He did not know the specific infective agent but was certain that a treatment would soon be available in the form of a "vaccine of Pasteur or lymph of Koch."1 William Gowers and other writers believed that an infection could aggravate multiple sclerosis but was not the cause. There was a flurry of reports of virus and spirochete isolations and transmissions in the early decades of the 20th century, but none stood the tests of time and reproducibility. Absence of evidence is not evidence of absence, however, and the infection theory remained strong because it seemed to best fit the developing scenario. Every new antibiotic and antiviral agent is given a trial in multiple sclerosis. Viral infections have been suspected in clusters of cases, including the "epidemic"-like appearance and disappearance of a cluster of cases on the Faroe Islands.2

Intriguing epidemiological but weak virological and immunological evidence has resulted in a bewildering list of usual suspects including measles, rabies, scrapie-like agent, Carp agent, paramyxovirus, coronavirus, Epstein-Barr virus, herpes zoster, herpes simplex virus, human herpesvirus 6, rubella, mumps, canine distemper, Marek's Semliki forest virus, animal and human retroviruses, and human T cell lymphoma virus type I.3 Although multiple sclerosis was on the top of the list of "most likely" when the concept of slow virus infection was being formulated in the 1960s, the transmission experiments were all negative. Interestingly, Stanley Pruziner, recent Nobel laureate for his work on prions, does not have multiple sclerosis on his personal list of possible prion diseases.4

Current scientific interest is focused on chlamydia pneumonia and the Epstein-Barr virus. Epstein-Barr virus has been under suspicion for over two decades, and recently it was noted that patients with multiple sclerosis had an increase in respiratory infections before the onset of multiple sclerosis and a fivefold increase over controls in infectious mononucleosis.5 Is this an indication of a specific role for Epstein-Barr virus or just an indication of a non-specific response of the immune system in patients with multiple sclerosis?

A vascular theory for multiple sclerosis resurfaced with the development of anticoagulants, replaced in the 1960s by an interest in dietary therapies, which had a vascular defect as part of the rationale. Recent work is again focused on the vascular changes as a basis of the breakdown of the blood-brain barrier that precedes the inflammation and demyelination in a multiple sclerosis plaque. Proponents of the infection theory would add that an infection could be the initial event that precipitates this process.

Over the past century and a half, bolstered by a body of observations and anecdotes, proponents of aetiological theories have focused on environmental toxins, "neuropathic constitution," physical and emotional stresses, circulating myelinotoxins and lipolytic enzymes, dietary factors, and vascular thrombosis. Early writers all noted occasional cases in a family but dismissed these as coincidental. Recent research is convincing in showing the risk in siblings and fraternal twins to be about 2-5%, much higher than in the normal population, but about 30% in identical twins, a clear indication of a genetic factor.6 But why don't the two thirds of genetically predisposed identical twins get the disease? The conclusion is that multiple sclerosis is a complex trait, determined by multiple genes and an environmental factor. Is the other factor an infection?

There has been a reluctance to dispense with any theory when the answer is still unknown. So a current popular overarching theory postulates a genetically predisposed individual who develops a viral infection that disrupts the vascular relations in the blood-brain barrier and initiates an immune reaction that continues as a waxing and waning destructive process that damages myelin, and perhaps more importantly in the long term, the axons. But just as a workable and testable theory has evolved, important work by an international group implies potentially four pathological patterns of multiple sclerosis.7 So we must add to the quandary the possibility that we may be dealing with different disorders with different causes. No one ever said medicine was simple.

Jock Murray, professor.

Dalhousie University, Sir Charles Tupper Medical Building, 5849 University Avenue, Halifax NS, Canada B3H 4H7
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Postby sou » Wed Feb 25, 2009 12:54 pm

Thanks for putting a positive spin on the whole thread!


It's not me. It's the facts. Objective and cruel.

sou
Shortest joke: "We may not be able to cure MS but we can manage its symptoms."
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Postby chrishasms » Wed Feb 25, 2009 12:59 pm

I think the HiCy, or the other immune rebooting that is out there will soon be the norm. I'm fairly certain all of us who have done it are no worse, or eve a bit better than before we did it. I think the key is to do it when the disease first presents itself. I bet in the future, because of these treatments, insurance will start to cover run of the mill MRI's lets say every 2 years. The reason being is if someone shows a lesion, then the insurance company will know this person needs to be watched closely. If the person continues to pop off lesions, active no less, regardless of disability, restarting an immune system may be the best way to ensure the person never becomes a cripple.

You must remember, that is good enough. There is only the population of Colorado Springs with MS out there. If it was NY city it may be different. Either way, I doubt anyone would ever argue about making sure they never were disabled by MS because it was caught early.
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Postby robbie » Wed Feb 25, 2009 1:19 pm

do u still have ms chris because i remember a few months back you crossed out has and put had.
I would be more than happy if I slept and didn't wake up tomorrow.

same here
Had ms for over 19 years now.
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CURE IN OUR LIFETIME?

Postby Lyon » Wed Feb 25, 2009 1:28 pm

chrishasms wrote:I think the HiCy, or the other immune rebooting that is out there will soon be the norm.
CURE? I'm not familiar with everyone's definition of the word "CURE"

To indulge my own thoughts and ignore those of others, I think it will eventually be accepted that the "loss of evolutionary normal" conditions was behind the drastically increased incidence of MS allergies/asthma, all of the other "autoimmune/inflammatory" diseases and will be suspect in others like cancer and autism which seem to have materialized from no where and have baffled modern society.

Despite that, I think Chris is right and "rebooting" is going to be increasingly used and the push is going to be on isolating and eliminating (rebooting) only the aspects directly responsible for the MS process, resulting in a treatment which your local GP could do in his/her office with little or no recovery time.
Bob
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