What was your MS "Trigger"

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

Postby EJC » Tue May 10, 2011 1:34 pm

Thanks LR1234 - that's the perfect example of what I've come across people telling me.

I'm curious if anyone has ever done any form of research on this kind of subject?
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Postby Johnson » Tue May 10, 2011 2:02 pm

I has Giarda twice in six months, and a week after the second bout, had amoebic dysentery. A year later I was under incredible stress, and one afternoon, my left eye dimmed. The next day I was blind in that eye, started falling to the right, incredible fatigue... The rest is history.

Stress still kills me.
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Postby Asher » Tue May 10, 2011 2:37 pm

Dedicated to all the social media scientists:

Forer effect
The Forer effect (also called the Barnum Effect after P.T. Barnum's observation that "we've got something for everyone") is the observation that individuals will give high accuracy ratings to descriptions of their personality that supposedly are tailored specifically for them, but are in fact vague and general enough to apply to a wide range of people. This effect can provide a partial explanation for the widespread acceptance of some beliefs and practices, such as astrology, fortune telling, and some types of personality tests.

A related and more generic phenomenon effect is that of subjective validation.[1] Subjective validation occurs when two unrelated or even random events are perceived to be related because a belief, expectancy, or hypothesis demands a relationship. Thus people seek a correspondence between their perception of their personality and the contents of a horoscope.
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Postby Cece » Tue May 10, 2011 3:11 pm

My first optic neuritis attack was after high altitude hiking and a high altitude plane ride (Hawaii, honeymoon, Mt. Haleakala). What Cheer wrote about altitude and CCSVI, back in '09, resonated strongly with me.

The one that got me diagnosed was after childbirth and caring for a very difficult infant.

www.springerlink.com/content/jn4735n223001645/

Viral infections trigger multiple sclerosis relapses: a prospective seroepidemiological study
Stressful Life Events Precede Exacerbations of Multiple Sclerosis
www.psychosomaticmedicine.org/content/64/6/916.short


Very little turns up in google scholar when searching for 'horoscope'
The same is not true for CCSVI.
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Postby Shannon » Tue May 10, 2011 4:05 pm

I was at University, age 22, and I was walking to class with a pair of penny loafers on, and a backpack full of heavy books on my back. I slipped on the ice and the heavy backpack brought me down on my rear end with incredible force. I just about passed out. I went to the emergency room, where they basically had me lie down and lift my legs, etc., and sent me home. Less than a month later, I was back in the emergency room because I had an incident where my hand and arm suddenly went numb, progressing quickly to my entire upper torso. I thought it was a stroke. This was the first time anyone mentioned MS, and I was very scared. I was diagnosed with transversed myelitis and kept this diagnosis for 6 yrs. until my second event, which cinched the diagnosis of MS. I had been sleeping with an electric blanket underneath the sheets of my bed, and one morning I woke up with numbness in my legs and feet. MRI showed a change in the cervical spine lesion that was already there. To this day (17 yrs. later) I have no brain lesions, only symptoms. My hands are still numb every day of my life. I take neurontin, but it seems to be getting less effective at stopping it.
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Postby Johnson » Tue May 10, 2011 4:11 pm

Asher wrote:Dedicated to all the social media scientists:

Forer effect
The Forer effect (also called the Barnum Effect after P.T. Barnum's observation that "we've got something for everyone") is the observation that individuals will give high accuracy ratings to descriptions of their personality that supposedly are tailored specifically for them, but are in fact vague and general enough to apply to a wide range of people. This effect can provide a partial explanation for the widespread acceptance of some beliefs and practices, such as astrology, fortune telling, and some types of personality tests.

A related and more generic phenomenon effect is that of subjective validation.[1] Subjective validation occurs when two unrelated or even random events are perceived to be related because a belief, expectancy, or hypothesis demands a relationship. Thus people seek a correspondence between their perception of their personality and the contents of a horoscope.


We get it Asher.

Isaiah Berlin said: "To understand is to perceive patterns."

"Perceiving patterns is a prerequisite for understanding. Understanding itself is inferring the reasons for those patterns to exist. ..."

Do we perceive reality? Create it? Are we oblivious to it?

The cliché 'the only dumb question is the one not asked' has a veracity. Why dismiss people of friendly chatter as "social media scientists"? Dripping condensation chills my neck, dripping condescension opens up my nose.
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Postby 1eye » Tue May 10, 2011 4:43 pm

The only other 'triggered' attack I think I had was the day the Trade Center was flown into. It was still standing, but I was just about blind in one eye. I left work in case I would lose the ability to drive home. I was treated for a week with oral steroids. Most of my vision is OK now.
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'MS' is over - if you want it
Patients sans/without patience
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Postby civickiller » Tue May 10, 2011 5:21 pm

Shannon, I would suggest going to see an Upper Cervical Care dr. The fact that you only have spine lesions makes me think UCC would help. It relatively cheap to go see a ucc dr.
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Postby Shannon » Tue May 10, 2011 5:45 pm

Really? This is the first I've heard of it. Of course, my neuro isn't going to send me there, right? I will do a little research online and maybe have my GP give me a referral. Thanks for the suggestion! I also have a bit of an outgrowth at the bottom of my spine, near the top of my behind. I suspect it's a "tarlov cyst" and have been referred to a spinal doctor in the past. He refused to investigate my assumption, telling me that the outgrowth is typical in women. He says it's simply adipose tissue i.e. fat that accumulates there. I am 5'3" and 107 lbs., so I fail to see how I could accumulate fat anywhere! I wish I knew what I could do to get it looked at and treated properly. There are doctors who do surgery on these cysts, which basically accumulate spinal fluid at the base of the spine causing nerve compression. It would be great if it wasn't actually MS, but something else. :roll:
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Postby HappyPoet » Tue May 10, 2011 6:21 pm

Shannon,

Please read my posts (this thread, page one) to EJC about Dr. Flanagan's thread on this site.

Dr. Flanagan will answer any questions you have, will help you find the right kind of Upper Cervical chiro (UCC) that civickiller is talking about, and will look over your images.

He's fantastic, and cheerleader (Joan Beal), bestadmom (Michelle, Dr. Sclafani's first patient and biggest supporter), and Arlene Hubbard believe in CCVBP.

Best of luck!
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ccsvi

Postby blossom » Tue May 10, 2011 6:31 pm

had a very bad fall in 1990. my symptoms started shortly afterwards.
i'll believe till the day i die that the fall brought this on.

i read somewhere that trauma, genetics orembrionary problems could cause ccsvi in some instances. that's what drew me to the ccsvi treatment.

ccvbp as happypoet points out comes into play,
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Postby civickiller » Tue May 10, 2011 6:44 pm

Yeah your neuro isn't gonna send you there, but not their fault, like they would if they knew about ucc lol, because NO dr has ever heard of them.

If the ucc dr you go to accepts insurance because mine didn't. I've heard costs from $300 to $50 for your first visit but it worked for me off and on. It got rid of my heat intolerance, better walking, balance

you can check out nucca.org to find a dr near you.

But Im 5'6 115 lbs and I got 10% fat, I'm like a walking skeleton. I don't know where my fat is hiding
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Postby orion98665 » Tue May 10, 2011 6:54 pm

Wife's MS trigger was stress. Mom dx cancer caused her stress followed by
loss in weight then optic neuritis.

Bob
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Postby Asher » Tue May 10, 2011 11:13 pm

Asher wrote:
Dedicated to all the social media scientists:

Forer effect
The Forer effect (also called the Barnum Effect after P.T. Barnum's observation that "we've got something for everyone") is the observation that individuals will give high accuracy ratings to descriptions of their personality that supposedly are tailored specifically for them, but are in fact vague and general enough to apply to a wide range of people. This effect can provide a partial explanation for the widespread acceptance of some beliefs and practices, such as astrology, fortune telling, and some types of personality tests.

A related and more generic phenomenon effect is that of subjective validation.[1] Subjective validation occurs when two unrelated or even random events are perceived to be related because a belief, expectancy, or hypothesis demands a relationship. Thus people seek a correspondence between their perception of their personality and the contents of a horoscope.


We get it Asher.

Isaiah Berlin said: "To understand is to perceive patterns."

"Perceiving patterns is a prerequisite for understanding. Understanding itself is inferring the reasons for those patterns to exist. ..."

Do we perceive reality? Create it? Are we oblivious to it?

The cliché 'the only dumb question is the one not asked' has a veracity. Why dismiss people of friendly chatter as "social media scientists"? Dripping condensation chills my neck, dripping condescension opens up my nose.


Well, if it were innocent friendly chatter I would not bother. But this friendly chatter is getting disabled, desperate, innocent people to spend money they can ill afford to spend on pseudo science.

To practice "To understand is to perceive patterns" you need to possess some thought discipline and integrity. What is your null hypothesis? What is your sample size? How many 'healthy' controls will you include? What is your interval of confidence? The trigger question has and is being addressed by scientists, so far to little avail.

Yes, you are practicing worthless 'social media science' and since the so called CCSVI has serious financial and health implications I will speak up. your back and nose don't impress me.
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Postby Johnson » Wed May 11, 2011 12:43 am

Asher wrote:(78kb of bandwidth saved)

Well, if it were innocent friendly chatter I would not bother. But this friendly chatter is getting disabled, desperate, innocent people to spend money they can ill afford to spend on pseudo science.

To practice "To understand is to perceive patterns" you need to possess some thought discipline and integrity. What is your null hypothesis? What is your sample size? How many 'healthy' controls will you include? What is your interval of confidence? The trigger question has and is being addressed by scientists, so far to little avail.

Yes, you are practicing worthless 'social media science' and since the so called CCSVI has serious financial and health implications I will speak up. your back and nose don't impress me.


Just try something different than cut and paste the same discouragement on thread after thread. Your tiresome Forer effect is off-topic.
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