MS therapy divides

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

Postby scorpion » Thu Aug 12, 2010 12:24 pm

Thanks Lyon but since my diagnosis it has been so frustrating when I can not come up with a word or I make some kind of stupid spelling mistake(right body?lol). Cognitive issues are different than having a limp or being uncoordinated because it is not as easy to see but it is just as frustrating. I know. I took the bait and I am deleting my response. Well at least part of it.
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Postby PCakes » Thu Aug 12, 2010 12:29 pm

Scorpion... oh man i hear ya..
Before I was diagnosed with MS I did not make these stupid spelling errors or put in words that should not be there but since my diagnosis they pop up everywhere and it is really frustrating.


If i may.. i think that things are getting all mucked up here.. the stuff that 1eye posted was copy and pasted from the comments section of the article that you posted that started all of this.. (stop..take breath).. and the I/E/typo.. sailed over my head ??

TMrox..sorry that this has happened to you..good to know it's not this crew..

ftr.. as eloquently as i can put this.. that top ten list .. harsh!

Peace..out..
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Postby scorpion » Thu Aug 12, 2010 12:43 pm

Gotcha Pcakes. I honestly never read the comments section at the bottom of an article because most of the stuff people write in this section is utterly ridiculous. Just for the record, I did not find the top ten funny.
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Postby Cece » Thu Aug 12, 2010 12:55 pm

Lyon wrote:Don't kid yourself scorpion, you are not alone. 1eye makes mistakes in the midst of pointing out the mistakes of others:

1eye wrote:1. Found something else to do besides type in responses to more stupid 'paper' tricks on the Internet.
and the number one reason why people FAIL to fall silent after their Liberation treatment:

They love to say 'I told you so'.

I don't see an error there. He counted down the top ten reasons why people do fall silent after the liberation procedure, then moved on and gave the number one reason why people don't fall silent.
"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition
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Postby Lyon » Thu Aug 12, 2010 1:09 pm

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Postby Cece » Thu Aug 12, 2010 1:15 pm

Lyon wrote:
Cece wrote: I don't see an error there. He counted down the top ten reasons why people do fall silent after the liberation procedure, then moved on and gave the number one reason why people don't fall silent.
My bad. While I won't say that I don't spend "enough" time reading 1eye's posts, I will say that, at best, I quickly gloss over them.

Your loss...there are moments of brilliance in there.
"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition
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Postby Lyon » Thu Aug 12, 2010 1:17 pm

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Postby Rokkit » Thu Aug 12, 2010 2:14 pm

TMrox wrote:The link that Scorpio shared, talks about the experience of Chant, a MS patient who is skeptic about CCSVI, and the criticism he has received in online chatrooms. Hey, he has not precisely been told nice things for sharing his views...

It's not because of the skepticism, it's because of the attitude. Here's what the guy says in the article:
He believes others, who constantly chit-chat about impending trips to Bulgaria or Poland or India for the procedure, go underground after they get the treatment but aren't cured.

"They disappear," he said. "The website goes quiet. They don't want to admit they spent $30,000 for an Aspirin."

A pwMS did everything they could to help themself and spent a ton of money out of their own pocket and you want say they spent $30,000 for an aspirin? How do you know they didn't just stop their MS dead in its tracks? I'm sorry but if someone wants to go to another country and pay big bucks for stem cells because they think that's what they should do, then power to them, I sure the heck am not going to sit back here and make fun of them. It's not the skepticism, it's the attitude. I just don't get it.
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Postby jimmylegs » Thu Aug 12, 2010 2:26 pm

there are some items on this thread that allude with extreme disrespect to the real suffering of a member of the TIMS family.

i would like to see these references removed by the posters involved, whether you initiated or quoted the offending subject matter.

yes i could remove it myself but i would like you to edit yourselves (from the looks of things, some editing may be in the process right now...)

thanks very much for your cooperation,

jimmylegs
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Postby shye » Thu Aug 12, 2010 2:54 pm

what I keep running into is a super-sensitivity--most don't seem able to accept that someone doesn't like their stance on the topic, so run to the monitor if their feelings get hurt.
Why not just accept reality? If someone disagrees with you, argue back with facts---or just drop from the thread. All of this is meant for us to learn from each other--from our experiences, our particular areas of expertise, our biases--and if you don't like what you are reading, just stop reading....
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Postby jimmylegs » Thu Aug 12, 2010 2:58 pm

shye what i'm talking about is far, far from super-sensitivity. it's super INsensitivity.
READ ME key info on nutrient targets - www.thisisms.com/ftopict-2489.html
my approach: no meds so far - just nutrient-dense anti-inflammatory whole foods, and supplements where needed
info: www.whfoods.com, www.nutritiondata.com
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Postby 1eye » Thu Aug 12, 2010 3:42 pm

Dear JimmyLegs,

My Top 10 list was meant to be funny. If the opponents of Liberation can make reference ad nauseam to the stent incident, so can I. In fun. I bet Radek likes the list. That's all that matters to me, as far as insensitivity goes. I made the spelling remark just to be insensitive. Oh dear me. I guess if directed to I will edit it out.

But it's kind of useless because I already posted it to a blog on the news story... some people have very thin skins when they want to. Right, guys?

Like Bette Middler says "Fuck em if they can't take a joke."
"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 TMrox » Thu Aug 12, 2010 4:25 pm

Not funny but very recently a Doctor, who is not involved in my medical case, told me that I had paid tons of money for my aspirin.

He told me that right in my face, but he really meant it with no offence and was just genuinely worried about my health.

I said.
a) Well I did not pay tons of money. The costs, which were below what I had paid for my neuros’ fees, were covered by my insurance.
b) I did have lots of improvements in my quality of life after the angio.
c) The treatment bizarrely stopped my migraines, the migraines that the aspirins could not stop.

It is so hard to read the actual intention of messages. Some are meant with genuine concern, others with sarcasm and others just trying to be funny but not everyone shares same humour... So the least we can do is to respect each other's opinion and cut any attitude that might be misperceived.

Rox
Diagnosed with Transverse Myelitis in December 2008. Inflammatory demyelination of the spinal cord (c3-c5). No MS, but still CCSVI.
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Postby Johnson » Thu Aug 12, 2010 4:27 pm

The division, derision, etc., have little to do with CCSVI exclusively, I don't think. It's just human nature. Everyone wants to be right, and males tend to be even more invested in that. Some just like debate, which is healthy. Some want to stir the pot, which is an aspect of some strange personality disorder that I don't understand. Some are just angry at all of the injustices they may have suffered and need to lash out as an expression. Anger (with the exception of righteous or immediate anger) is often rooted in fear. People are frightened to their core that they are going to die drooling in some dank hospice. CCSVI is a bright light in a dark world, and a lot are fearfully angry when others - many with vested interests - try to kill their hope.

CCSVI is a very real phenomenon, which has not been proven, in enough trials, to cause, or influence "MS". There is a lot of anecdotal evidence that it relieves symptoms in some people, some have no benefit, and some feel as if they never had "MS". I was greatly relieved by my procedure, but on the second day, I could tell that things were stenosing again. My benefit lasted , dwindlingly, for about a month. My fatigue is back My dizziness is back. a lot of stuff is back, but my EDSS before the procedure was 5.5. The day after, it was about 1.5. Today, two months later, it is 4.0. FSS went from 6.5 to ZERO on the day after. Today, it is about a 3. MSIS in Dec. 09 was 86. In May 10 it was 118. Today it is 66. The procedure worked for me in the short term - enough that I am going back for round 2 in October. It didn't cost me $30 Gs, it cost ten. Round 2 will be 3 Gs more. I took back two years worth of wine bottles the other week (because I had the energy), and figured out that we drank $13,000 worth of wine over two years. That was money well spent, but the 13 for liberation is infinitely more so.

There is no need for divisiveness. Everybody needs to follow their own hearts (because they actually are intelligent, with the same type of neurons as the brain). I did, and it mattered not what the neuro said, or Drs Khan, Freedman, whomever had to say. It bugs me that there are many seeking answers who run into so much negativity, and such, but that is human nature too - some can think and act for themselves, and some can't. I am sure that there are all levels of how people have dealt/are dealing with having "MS" too. Think Kubler-Ross and the five stages of grief.
My name is not really Johnson. MSed up since 1993
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Postby 1eye » Thu Aug 12, 2010 5:11 pm

Johnson wrote:Think Kubler-Ross and the five stages of grief.


What are they, anyway?

denial -- actually helpful, for a while. not a river in egypt.
bargaining -- tried to bargain with neurologists who just said "no"
depression -- not with these handy-dandy happy pills
acceptance -- well I'm in the dadgum wheelchair and I take all my meds, so I'm gonna die? bring it on...

anger: that one I have no problem with. angry I am. Not because I have a disease, or that it's gonna kill me, or that I ain't ready. I am. But if I don't live to see the neigh-sayers proved wrong: well then I'm really gonna be mad.

But Kubler Ross left out a few:

1.5 Distraction -- used to facilitate denial. Like turning 40, only much worse.
2.5 Stealing -- used to get more money and better drugs. When caught, see number 2 -- bargaining.
3.5 Disillusionment -- jaded opinions becoming rampant as one finds out about truth, justice, the American Way, and that Superman killed himself because he was typecast, and the Scientific Method and what Really Motivates, and I need a drink.
4.5 Alcoholism -- the second-last stage before death, and I'm leaving on the next one. Buy you a drink?
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CCSVI procedure Albany Aug 2010
'MS' is over - if you want it
Patients sans/without patience
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