Please help! Treatment in Poland is at risk!

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

Please help! Treatment in Poland is at risk!

Postby Rici » Fri Oct 22, 2010 1:17 pm

A neurologist, Prof. Ryglew, and the director of the medical association of Poland have contacted the ministry of health in an attempt to shut down CCSVI treatment in Poland. Please write e-mails to ryglew@ipin.edu.pl and prezes@hipokrates.org and ask them to stop their attempts and state why the CCSVI treatment is needed. Or, if you're already treated, tell them your experience. Please send me a blind copy of your mail to wiercin@gmail.com, so I can collect them and use them to confront both with them.

Thank you for your help!
Rici
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Postby Algis » Fri Oct 22, 2010 9:08 pm

Anyone have a sample of what to write? I have no idea on what/how to say...

Thanks in advance :)
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Postby Rici » Sat Oct 23, 2010 1:27 am

Algis wrote:Anyone have a sample of what to write? I have no idea on what/how to say...

Thanks in advance :)

Every e-mail must contain the different content because each casce is different but we already know that the operation is the only way for recover. They can not forbid the operation - we with our e-mail protest have to stop them.
tkhs
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Postby Robnl » Sat Oct 23, 2010 3:34 am

Rici,

I;ve sent an email!

Robert
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Postby cah » Sat Oct 23, 2010 3:36 am

Algis wrote:Anyone have a sample of what to write? I have no idea on what/how to say...

Thanks in advance :)


I've skyped with Rici about that. Just write what you think about the treatment and why it shouldn't be stopped. Then ask them not to stop it. Don't bother too much about what to write, just write what comes to your mind. Hey, it's just an email - you wrote comments here which are more complicated than that! ;)
The main purpose of this campaign is to show them that there are a lot of people who wouldn't accept the treatment being shut down.

That "lot of" is nearly zero yet! So please go for it! Thank you!
"There is only one good, knowledge, and one evil, ignorance." Socrates
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Postby Algis » Sat Oct 23, 2010 4:04 am

Well; I tried - don't shoot :?
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Postby sbr487 » Sat Oct 23, 2010 5:42 am

what is the point of writing to a neurologist?
If you think he would understand patients sentiments, this situation would not have arisen in the first place?
A new scientific truth does not triumph by convincing its opponents and making them see the light, but rather because its opponents eventually die and a new generation grows up that is familiar with it
- Max Planck
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Postby Rici » Sat Oct 23, 2010 6:29 am

For their attacks and plans to be dismissed. For to see that the sick people they allready know what are theirs evil plans and intentions. For them to know that we are aware of their plans.
Regards
Rici
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Postby Pepe » Sat Oct 23, 2010 9:01 am

Hi all,

This makes me so... so... so... angry, that...after sending the e-mails I am going to comunicate other people what is happening.

WE HAVE TO REACT AS QUICKLY AS POSSIBLE!!!

WE CAN NOT ACCEPT THAT!!!

WE HAVE TO FIGTH NAIL AND TOOTH AGAINTS THEIR INTENTIONS!!!

NO PASARÁN!!!

Regards,
Pepe.
María was Dx RRMS 1996. SPMS since 2003; Dx CCSVI by Dr. Simka on Dec.-2009; Balloon angioplasty on Jan.-2010 in Katowice (Poland); Betaseron (2000-2009); Tysabri since June 2009. BBD since 2003. IBT since Jan.-2010.
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Postby sbr487 » Sat Oct 23, 2010 9:40 am

Rici wrote:For their attacks and plans to be dismissed. For to see that the sick people they allready know what are theirs evil plans and intentions. For them to know that we are aware of their plans.
Regards
Rici


agree, rici ... sorry about my post. i was really angry ...

I just sent an email ... hope it makes a difference ...
A new scientific truth does not triumph by convincing its opponents and making them see the light, but rather because its opponents eventually die and a new generation grows up that is familiar with it
- Max Planck
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Postby JohnAm » Sat Oct 23, 2010 10:20 am

Where does this Prof. Ryglew come from? What university och institution is he associated with? Any ties to pharma? Has he published anything on the subject?

Has the pharma industry managed to find a neurologist to question the clinics i Poland and drive this process? :?


---
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Here's my 20 cents

Postby Ruthless67 » Sat Oct 23, 2010 10:35 am

Dear Sirs,

I have been through most all the Multiple Sclerosis drugs on the market so far with the exception of Tysabri and the newest “oral” drugs, which are said to be no safer, just “easier” for some MS patients to swallow than self injecting. But the side effects of these drugs are still truly frightening.

I have lost a good friend, Linda, from Leukemia in 1991, she died after she was on the drug named Imuran, which was used to suppress white blood cells. My minister’s son-in-law, just finished his awful Cancer treatments to counter act the Leukemia he got from his MS drug, Copaxone. It has cost his young family a tremendous financial price in lost income, astronomical hospital costs, not even to mention Mark’s emotional and physical health, etc.

It’s just unconscionable to me that MS patients are offered these drugs and nothing else when they see their MS Specialists. And that the risks from the side effects is downplayed. The Avonex I was on darn near gave me Leukemia as well before I stopped the injections. My white blood cell count was dangerously down.

I have continued to progress in spite of these drugs. I have also tried some of the “fringe” ideas, the Prokarin Patch, the Swank Diet and later the Candida Diet. The diets on the other hand made me feel healthier and I lost weight, but they don’t seem to be the complete answer either. And as you would expect, the fringe approaches had less than satisfactory results as far as MS progression goes.

Through the research work of Dr. Zamboni in Italy and the work being done in Poland by Dr. Simka many discoveries about Multiple Sclerosis and the human venous system have been identified. Past work by researchers has also pointed to a venous involvement in Multiple Sclerosis, this is nothing new!

There are researchers all over the globe working on the “Multiple Sclerosis Puzzle” now, more so than in the last few decades, and they are sharing their findings. This is monumental effort from MANY specialties that are coming together to find answers.

This is where your energies should be directed, in helping this research move forward, not halt it’s progress.

On a personal note, because I became aware of CCSVI Research, I have had the MRI & MRV completed at Stanford University, in CA, USA. I was found to have a type of anatomical variant along with ischemic problems through the posterior blood supply to the brain, which are the vertebral-basilar arteries. There is bilateral evidence of jugular obstruction with multiple collaterals noted more prominently on the right side. In addition, findings infer the possibility of valvular abnormalities as the cusps of both jugular valves appear very prominent. It was also noted in later cervical x-rays performed in Missoula, MT, USA, that I have a head tilt to the left and a side slip of atlas to the right with left posterior rotation.

None of this has ever been addressed in all my 17 years of MS treatment and previous MRI’s and x-rays. So I have now had the good fortune of having three independent professionals read my current MRI, MRV & Cervical X-rays. One in New York, one in Montana and one in California and they all concur, I have Venous issues!!

If I were fortunate enough to be able to have Dr. Simka in Poland perform my angioplasty, I wouldn’t hesitate. Unfortunately, that kind of travel and expense are not available to me. I am currently awaiting a CCSVI Trial here in the US.

This research is making great strides into understanding this disease. Be part of the solution and the discoveries, not a road block.

Multiple Sclerosis patients don’t need protected, they need answers and I truly don’t believe that drugs are the end all answer. A part of the puzzle perhaps, but not the answer.

Let’s get to the CAUSE of MS, then we will have answers!!

In the mean time I’ll get Upper Cervical Chiropractic correction to improve my arterial and venous flows as well as cerebrospinal fluid flow. My next step will be to enroll in a CCSVI Trial, as soon as one becomes available.

What I absolutely won’t do is try any more pharmaceuticals.
Respectfully,
Lora
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Postby Rici » Sat Oct 23, 2010 10:49 am

My freinds, thanks all of you. Till now I have 5 e-mails from abroad.
Please send me more. Hundreds of people read my post, five of you send me your opinion - thanks for that. Next week we have meeting with the politician from the Health Ministry. I beg you for e-mails.Many. Many thanks in advance. Greetings
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Re: Please help! Treatment in Poland is at risk!

Postby girlgeek33 » Sat Oct 23, 2010 11:42 am

Rici wrote:A neurologist, Prof. Ryglew, and the director of the medical association of Poland have contacted the ministry of health in an attempt to shut down CCSVI treatment in Poland. Please write e-mails to ryglew@ipin.edu.pl and prezes@hipokrates.org and ask them to stop their attempts and state why the CCSVI treatment is needed. Or, if you're already treated, tell them your experience. Please send me a blind copy of your mail to wiercin@gmail.com, so I can collect them and use them to confront both with them.

Thank you for your help!
Rici


I think everyone should write to the ministry of health, forget the neuro. Neuros have something to lose, they wont listen! Wasted energy to try and convince a neuro.

How did you find out about this?
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Re: Please help! Treatment in Poland is at risk!

Postby Rici » Sat Oct 23, 2010 12:07 pm

[quote="girlgeek33"]

I think everyone should write to the ministry of health, forget the neuro. Neuros have something to lose, they wont listen! Wasted energy to try and convince a neuro.

How did you find out about this?[/quote
Here is the correspondence on this subject, but unfortunately in Polish
http://www.ccsvi-ms.pl/01%20list-sm-stenty.pdf
http://www.ccsvi-ms.pl/02%20list%20prez ... ologii.pdf
http://www.ccsvi-ms.pl/03%20list%20kons ... lewicz.pdf
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