re: article High Time for HiCy?

A board to discuss Revimmune as a potential therapy for multiple sclerosis

Postby Frank » Fri Aug 22, 2008 3:37 pm

Hi Kyle,

acutally MS is not going to kill you at all. If pure survival is the most signisficant point for you than HDC should not be an option.

But some people see themselfs deteriorating from month to month and thus losing their social lifes in various ways - job, relationships, friends, sports, whatever.
These setbacks either really experienced (temporary or persisting) or even "just" imagined / feared might lead one to the attitued that a relatively low risk of serious complications might be acceptable to have the chance of benefit from the treatment.

While everyone has to make this decision - best informed as possibel - on himself, I do well understand that MS can leave one pretty desperate and lonely and thus take steps not considered at all under different circumstances.

--Frank
Treatment: Gilenya since 01/2011, CCSVI both IJV ballooned 09/2010, Tysabri stopped after 24 Infusions and positive JCV antibody test, after LDN, ABX Wheldon Regime for 1 year.
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Postby gwa » Fri Aug 22, 2008 3:57 pm

Frank wrote:Hi Kyle,

acutally MS is not going to kill you at all.



This is not true. MS can and does kill people and to think otherwise is deceiving oneself.

gwa
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Postby Frank » Fri Aug 22, 2008 4:14 pm

Hi gwa,

it is true that secondary effects of disabilities aquired through MS could lead to an increased mortality rate - e.g. pneumonia in bedridden people.
But I honestly dont know about any study that was able to scientificly reason that MS in itself is a fatal condition, do you?
How do you come to that position?

--Frank
Treatment: Gilenya since 01/2011, CCSVI both IJV ballooned 09/2010, Tysabri stopped after 24 Infusions and positive JCV antibody test, after LDN, ABX Wheldon Regime for 1 year.
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Postby RedPenguins » Fri Aug 22, 2008 5:20 pm

Kyle - did you actually read that article? It's been a while since I've read it - however, Lovelace, the patient, did NOT have MS, I believe she had SAA. And this was also over a dozen years ago that she had the treatment - when they didn't know much about it!

And yet, even with that quote - no one has died.

Ho Hum.

~Keri
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Postby Jamie » Fri Aug 22, 2008 5:44 pm

Kyle,

You are seriously negative about all this.

If you don't want to then don't.

But don't take things out of context, your general inconsistencies are one thing but you seem to have a big axe to grind about HiCy.

Jamie.
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Postby gwa » Fri Aug 22, 2008 6:58 pm

http://www.pubmedcentral.nih.gov/articl ... id=2170172

This article is copyrighted, but if you go to the link and read the conclusions of the study, it will indicate that more than half of the patients with multiple sclerosis die from the disease or complications from it.

People often mistakenly think that it is not a fatal disease, but it is in half of the patients. There are a lot of articles referencing this fact if you care to look up the relationship between death from MS.

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Postby CureOrBust » Fri Aug 22, 2008 11:39 pm

Frank wrote:I honestly dont know about any study that was able to scientifically reason that MS in itself is a fatal condition, do you?
How do you come to that position?
I personally would not consider MS in itself a fatal disease, however, I do feel that complications in patients who have MS, that would not occur if they didn't, is treated with disregard.

However, I am sure I have read an article (I think it was even on the front page of this site!) where some woman died very soon after/during a relapse because the demylination was in a part of the brain necessary for life. The article was mostly interested in the fact that it was one of the few times scientists got to do an autopsy on an MS brain so soon after/during a relapse; i.e. a fresh plaque. They saw it as an opportunity to examine an MS plaque in the very early stages. It was a few years ago now, so I could be wrong.
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Postby Lyon » Sat Aug 23, 2008 8:00 am

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Postby CureOrBust » Sat Aug 23, 2008 6:22 pm

I was also thinking of preneas and barnett at the time, but I did not realise they were one in the same (I thought their patient died of an accident or something).

Frank wrote:But I honestly dont know about any study that was able to scientificly reason that MS in itself is a fatal condition, do you?

This question of MS being a fatal disease (although rare) I think can now be answered as yes, I checked on google, and found over 900 hits combing MS and NPE

I do agree with you Frank that it can leave a patient feeling that it may as well of been... or to take the risk of a possibly fatal treatment, and this would become the real driver.
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Postby Lyon » Sat Aug 23, 2008 8:14 pm

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Postby ZO_Krille » Thu Aug 28, 2008 9:27 pm

This topic can go on forever and has anyone considered that suicide as a direct cause of death from MS? I'm sure most of us that have been diagnosed as having MS, that incurable, chronic illness that can only bcome worse; in the early years we have had the thought cross our minds.

The fact is that Life in itself is fatal. Everyday we live we face death either by illness or accidental causes. Most surgery patients are given that paper to sign that states, some risk of death as you are put to sleep for the surgery. Everytime we have a medical protocal done on us we are or should be thinking of the possible outcome versus the possilble benefits.

To me this HiCy treatment is a no brainer, but thats just me ;)

Krille

Diagnosed 1991 PPMS
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Postby Lyon » Fri Aug 29, 2008 12:34 pm

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Postby ZO_Krille » Fri Aug 29, 2008 1:27 pm

Hi Bob,

Yes i would go for it. In fact about 7 years ago a patient went through a similar process of rebooting immune system and that protocal required a bone morrow transplant but he had great success from that.

The Revimmune protocal that leaves the bone morrow stem cells to restore immune system is even better. When i first learned of it and shared the info with my daughters they asked, "Would you consider this, dad?" My response was, "In a heartbeat."

Being PPMS and living in Oregon i am sort of gathering information and waiting to see if some place in the west coast will begin trials. Not real sure that PPMS is a good candidate for third phase trials.

Krille / Christian

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