CCSVI may NOT be your answer

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

CCSVI may NOT be your answer

Postby fee001 » Sun Aug 14, 2011 5:03 am

Hi!


I think everyone knows that I believe that misdiagnosis is very possible as so many crossovers which I have looked into to elliminate from my particular case, hughes, lupus, lymes, m.e. etc the possible epstein barr link.

The conclusion that I came to is the reason why I cant walk, couldnt co ordinate with a walking stick, couldnt stay on my feet, had no resistance in leaning or holding onto things these are my facts (so cese no need to comment ok) unless you think I lie. I am NOT ok.

Over a ten year or more period my spine has twisted due to a tiny bone being out. I see the body as a piece of engineering, and if this (the Atlas) is a fraction of a mm out it renders the whole system useless.

CCSVI and its treatments yes WILL aleviate certain issues particularly blood circulation and also have a placebo effect as regarding nervous tension/stress related isues that effect mobility.

If you are LIKE me misdiagnosed on a possitive MRI (again my FACT) and you have mobility problems, spasm, tremor or l,hermittes, circulation issue, vision issues . Then your Atlas could be misaligned.

In my opinion CCSVI treatmets will NOT if you Atlas is misaligned, get you out of your wheelchair ok, it aleviates a SYMPTOM does NOT do anything else.

CCSVI treatmentsa are not relevant to me or anyone similar ok, it is NOT the be all and end all ok. And newly diagnosed must be so overwhelmed by the incessant banging on about one size fitting all, because life isnt like that, varients do happen,mistakes DO happen.

Debate discussion and a pondering over perhaps several different issues is good and healthy. But will NOT happen when the obsession with CCSVI treatments exists. The narrowing does happen but allow others to explore alternative, else we learn nothing.

OK my last post completed
Thanx

Fiona
I do my own research, and find my own answers Its good to talk
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Postby dania » Sun Aug 14, 2011 6:35 am

Good one Fee! I often often wondered why I must keep my head looking up at the ceiling in order to have the strength to do anything. The moment I tilt my head forward it is like the power has been turned off. I have so much trouble eating as I must tilt my head down to look at the plate and I end up collapsing into it.
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Re: CCSVI may NOT be your answer

Postby NHE » Sun Aug 14, 2011 3:12 pm

fee001 wrote:CCSVI treatmentsa are not relevant to me or anyone similar ok, it is NOT the be all and end all ok. And newly diagnosed must be so overwhelmed by the incessant banging on about one size fitting all, because life isnt like that, varients do happen,mistakes DO happen.

Debate discussion and a pondering over perhaps several different issues is good and healthy. But will NOT happen when the obsession with CCSVI treatments exists. The narrowing does happen but allow others to explore alternative, else we learn nothing.


Fiona,
No one is stopping anyone from researching anything they want to. Here's a link to PubMed. Feel free to research away.

NHE
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Postby Robnl » Mon Aug 15, 2011 4:43 am

It's interesting, see:
http://www.youtube.com/watch?v=ngGZZaUf ... dded#at=66

For me CCSVI tratment helped somewhat, other things like LDN etc etc etc....nothing! No reactions at all

At the age of 10, while playing soccer, the ball hit my forehead with high force...BENG! So my head got a big punch backwards....

I'm going to talk to my physiotherapist about this.....
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Postby civickiller » Tue Aug 16, 2011 7:36 am

Fiona,

i hope you decide to stay and keep posting because we need as much people as we can get providing Upper Cervical Care awareness. The more people we get to try UCC the more we can help them and hopefully they spread the word about the benefits they see.

dont let other peoples negative attitude stop you from helping others with UCC awareness. if you stop then those people win

Robnl

when you get diagnosed with MS? around at 25? I think you could benefit by getting your atlas aligned
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Postby fee001 » Tue Aug 16, 2011 8:13 am

Civickiller,


You can count me in ok.


Fiona
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ccsvi

Postby blossom » Tue Aug 16, 2011 8:14 pm

what caught my attention about ccsvi was i had read that one of the possible causes of ccsvi was trauma. my symptoms all started after a trauma. i will go to my grave believeing it brought all this on,

i regret getting the ccsvi treatment when i did as we are finding there is much to be fine tuned. but i support ccsvi research as it is putting a whole new way of looking at the cause and treatment of our symptoms.

i am an old battleship takeing in a lot of water--but i'm not sunk yet but the repairs will be difficult if possinle at all. had i had the info. that is getting out now about uppercervical etc. i doubt things would be as bad as they are for me.

civickiller and you guys are so right--to try to get people to try their best to get their spine and the right upper cervical checked out first. it can do no harm. the earlier the better as with anything. then, if one wants to try ccsvi at least if may have a better chance success.
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Postby NZer1 » Tue Aug 16, 2011 11:57 pm

From CCSVI in New Zealand
This is a little reminder about the way that the skull alignment onto the spine does have effects in blood flows and pressures, as well as facts about the brain steam that can effect PwMSers.
http://www.youtube.com/user/doctordickh ... odj8SB5VVg
There are many Youtube videos in this series that are of interest to all PwMS imo.
Enjoy,
Nigel
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Postby fee001 » Wed Aug 17, 2011 12:43 am

Blossom


I thought this old ship was well and truely sunk, but I'm plugging up them holes one by one and I expect to float.

Hey! I'll help get this Atlas well and truely on the map. ha ha

I did ha ha 'cause I dont know how to do the smiley faces yet.

Fiona
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ccsvi

Postby blossom » Wed Aug 17, 2011 11:58 am

aye aye matey!
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