ccsvi WORKS !!!!!!

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

ccsvi WORKS !!!!!!

Postby atswc » Sat Jun 19, 2010 8:44 am

It fixed allot of thing i can walk like a person now :o) i can stand tall like a real person :o) i dont get tired any more i can hold my bladder :o) my brain is better, clear. my back my legs everything just WORKS!!
bulgaria dr P is the best out there, worth £4900 that i paid (would have paid 20.000)
:D :) :) because it worked
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Postby girlgeek33 » Sat Jun 19, 2010 9:12 am

I'm so very happy for you!!!!!! Welcome to liberation!!!!! :)
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Postby shye » Sat Jun 19, 2010 2:35 pm

Great news :!: , thanks for posting!
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Postby walcat » Sat Jun 19, 2010 3:06 pm

Congratulations!!! I'm so happy for you!
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Postby trapatron » Sun Jun 20, 2010 12:20 am

More and more great stories out there. How bad was you pre op in the EDSS scale?
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Postby belsadie » Sun Jun 20, 2010 6:06 am

Shouldn't this kind of info be considered authentic when judging the validity of a treatment? What IS wrong with the medical community? What is wrong with using these stories of success as just as important as the unethical "double blind study" where people are LIED TO. Whether they know it or not. The Placebo group is desperate enough to try anything. Is this tempting of patients with even the possibility of improvement- unethical? Please don't preach caring for the safety of clients as paramount in research when these same people deliberately lie...I need an explanation for this behavior.
But the dismissal of success is explained away as a placebo effect.
A very small % of placebo groups are really effected according to research: "placebo effect does occur with peripheral disease processes (such as Hypertension, asthma, prostatic hyperplasia, anal fissure, bronchitis) though not for processes reflecting physical disease (such as venous leg ulcers, Crohn’s disease, urinary tract infection, and chronic heart failure).[94] Placebos also do not work as strongly in clinical trials because the subjects do not know whether they might be getting a real treatment or a sham one."
Let's stop this nonsense and admit that someone who thinks our of the box has hit on a plausible explanation that's been experienced by so many disabled persons.
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Postby Lyon » Sun Jun 20, 2010 6:32 am

belsadie wrote:Let's stop this nonsense and admit that someone who thinks our of the box has hit on a plausible explanation that's been experienced by so many disabled persons.
Not agreeing nor disagreeing but through history research was led by first hand anecdotal data, which they eventually, purposely got away from because, unfiltered, it led research astray.

To clarify, you're now saying the logical, the right thing to do is heed the anecdotal information from people on the internet who realistically might have 10 "thisisms" monikers, all of them finding fantastic results with balloon dilation?
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Postby sofia » Sun Jun 20, 2010 7:26 am

There is no doubt in my mind either that it works. Non at all. Even if I had a little rough week most probably from over doing it, made my old symptoms flair up, or maybe it was a new attack. Who knows sertainly not me, and sertainly not my neuro.

For me it has been a month and half, and it is the best month and half I had in more then a year. The last couple of months before liberation I was deteriorating pretty quickly. I just got weaker and weaker, not like acute attacks but just getting worse. The last month I have been getting stronger and stronger.

Me and my boyfriend speak about it quite a bit, discussing if it is placebo, nonsebo, remission,or whatever it is going on wiht me, to us there is no doubt it is liberation.

I have found out, I am not cured, I still have my limits, its just all about getting used to my new life. I will provoke my MS, if I do not take it steady. But the change is so remarkable. It is a new life.

As for the money, it is easy for me to say it is nothing as I did not pay it myself, but had it given from my parants. But yes it has defently been worth it :-)
<div>I have lived with ms for 8 years. The last year has been hell, I've gone from shite to even worse every single month, until my liberation in May. </div>
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Postby Daisy3 » Sun Jun 20, 2010 8:38 am

What time of Ms do you have sofia? My hubby is also getting weaker and weaker..he has RPMS or PRMS as Dr Sclafani pointed out to me. Politely:-)
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Re: ccsvi WORKS !!!!!!

Postby thornyrose76 » Sun Jun 20, 2010 11:30 am

atswc wrote:It fixed allot of thing i can walk like a person now :o) i can stand tall like a real person :o) i dont get tired any more i can hold my bladder :o) my brain is better, clear. my back my legs everything just WORKS!!
bulgaria dr P is the best out there, worth £4900 that i paid (would have paid 20.000)
:D :) :) because it worked


Were they sudden or gradual improvements? :)
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Postby sofia » Sun Jun 20, 2010 12:08 pm

Hello Daisy

I was diagnosed with rrms in 2002. I've had a few relapses, but more or less full recovery after each relaps, and no fatigue to speal of.
But spring 2009 I got a vertigo relaps that just didn't clear up, I also stared feeling fatigued, and generally weaker all the time.

Neurologist did edss score on me be procedure and gave med 0.0, but my quality of life was shite. My eyesight was not right, but I did not have reduced vision or double vision. But it was not right. Vertigo could make me throw up, feeling constantly unwell, but it did not make me fall. Legs were weak, but I could walk far. And completly nocked out by fatigue and vertigo, feeling sick.

It was a side of ms that I had nevered experienced before, one that I didn't know exsisted. But yes maybe it felt a bit like progression with relapses. I had not been given diagnosis spms, but I think I was heading that way.

RPMS is something we don't hear about that much. How is your husban doing, how is his disease developing? Will he be having procedure, can he have medication or is that not for him?
<div>I have lived with ms for 8 years. The last year has been hell, I've gone from shite to even worse every single month, until my liberation in May. </div>
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Postby Daisy3 » Sun Jun 20, 2010 12:26 pm

sofia wrote:Hello Daisy

I was diagnosed with rrms in 2002. I've had a few relapses, but more or less full recovery after each relaps, and no fatigue to speal of.
But spring 2009 I got a vertigo relaps that just didn't clear up, I also stared feeling fatigued, and generally weaker all the time.

Neurologist did edss score on me be procedure and gave med 0.0, but my quality of life was shite. My eyesight was not right, but I did not have reduced vision or double vision. But it was not right. Vertigo could make me throw up, feeling constantly unwell, but it did not make me fall. Legs were weak, but I could walk far. And completly nocked out by fatigue and vertigo, feeling sick.

It was a side of ms that I had nevered experienced before, one that I didn't know exsisted. But yes maybe it felt a bit like progression with relapses. I had not been given diagnosis spms, but I think I was heading that way.

RPMS is something we don't hear about that much. How is your husban doing, how is his disease developing? Will he be having procedure, can he have medication or is that not for him?


I hope you continue to feel better:-)
Were going to try Copaxone and also look at CCSVI in Scotland.
It's a frightening disease as you have no idea what a new day will bring.
Having a rare form of it means the doctors are usually pretty stumped too. That's what were going through..I hope CCSVI does something good for him, but as it's not so good for PPMS then I wonder how good it will be for us? I am really hoping it works...
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Postby Cece » Sun Jun 20, 2010 12:34 pm

I feel sad when I read that ccsvi treatment is not good for ppms.... The promise or unproven hope of ccsvi treatment for ppms is that progression will stop. So PPMSers may not see the recovery that some of the other groups (who experience recovery in their MS in general, back and forth) do. PPMSers may not get to film youtube videos showing them jumping. But if PPMSers get to have their progression stopped, right where they are...that is huge, that is something we have never had before as an outcome for a treatment for MS.

Still there have been some reports of PPMSers who did show improvements...all is not yet known, but it is good to go into this with reasonable expectations...and I personally hope that the results beat those expectations, for all of us.
"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 Daisy3 » Sun Jun 20, 2010 12:41 pm

Cece wrote:I feel sad when I read that ccsvi treatment is not good for ppms.... The promise or unproven hope of ccsvi treatment for ppms is that progression will stop. So PPMSers may not see the recovery that some of the other groups (who experience recovery in their MS in general, back and forth) do. PPMSers may not get to film youtube videos showing them jumping. But if PPMSers get to have their progression stopped, right where they are...that is huge, that is something we have never had before as an outcome for a treatment for MS.

Still there have been some reports of PPMSers who did show improvements...all is not yet known, but it is good to go into this with reasonable expectations...and I personally hope that the results beat those expectations, for all of us.


Sorry Cece,

Did not mean to make you sad..guess it's my own fears of how much this CCSVI will help us or not. We have no idea if there is any stenosis in the first place and were waiting for an appointment.
Truth is we won't know much until we have more info from the research being done..and you are right, if it stops progression then that it in itself will be a gift from god.
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re CCSVI TREATMENT IN BULGARIA

Postby seeva » Thu Jun 24, 2010 4:32 am

HI astswc please let us know you expereances on your ccsvi treatment. in BULGARIA. did you had any stents for your jugular veins.is the treatment help patients have PPMS. you know any one with SPMS.i have received a
date for my procedure at TOKUDA hospital in SOFIA, BULGARIA.IN OCTOBER.accomadations inthe hospital orcan be arrange outside near by hotel.please let me know wher do you stay during you treatment.my DR. IS CONCERN ABOUT the sten they are using.so far no sten avilable in AUSTRALIA,or U.K.but POLAND AND BULGARIA, INDIA are using stents for veins. how good are them. is any problems with the stents.
please let me know.
regards
seeva
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