Please help! Treatment in Poland is at risk!

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

Postby HappyPoet » Sat Oct 23, 2010 12:12 pm

Rici, all done!

:)

It's terrific that you're doing this! Maybe some people are sending the emails but are forgetting to list you as a BCC.

I hope we win this one!
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Postby Johnson » Sat Oct 23, 2010 12:31 pm

Dear Esteemed Sirs,

I have been informed that there are attempts being made to halt treatment for Chronic Cerebro-Spinal Venous Insufficient (CCSVI) in Poland. I would sincerely hope that this is not the case.

As you will know, Professor Paulo Zamboni, of the University of Ferrara in Italy, found that the internal jugular veins of Multiple Sclerosis (MS) patients were almost universally suffering stenosis, and when these stenoses were remedied by Percutaneous Trans-luminal Angioplasty (PTA), patients experienced remarkable relief from many symptoms of MS, and an improved quality of life. I have struggled with the debilitating symptoms of MS for 18 years, and in May of 2008 started to deteriorate at an accelerated rate. In November 2009 I learned of Dr. Zamboni's research, and immediately understood that it might help me. In December 2009, I learned that the only place in the world that I could obtain treatment was in Katowice, Poland, and I applied to a rapidly growing waiting list. I had treatment in June 2010 in Katowice, and experienced immediate and profound relief from all symptoms of MS. My fatigue was relieved, as was my dizziness, impaired cognition, strength returned to my legs, and I could look forward to life again, rather than live in dark despair. I saw people in the group that was treated with me experience the same benefits. One woman, who had traveled to Katowice from Switzerland, was pushing her own wheel chair the day after the treatment. She had been sitting in that wheel chair for two years before being treated by Dr. Simka's team of experts.

To this date, the team of surgeons at Euromedic Poland have treated more people with CCSVI/MS than any other in the world. They are highly effective in performing this very safe treatment. I had not so much as a bruise following my own treatment, and hope returned to me. I would implore you not to oppose this treatment in Poland, but to contribute to making the treatment even more effective (and available) by participating in the global research effort into CCSVI & MS being undertaken. Poland is a bright light of progress and compassion for the global community of people suffering from MS/CCSVI. Not only does this treatment in Poland give relief to hundreds with no other hope, it raises the stature of the Polish medical community, and it brings increased commerce to Poland in the hundreds of thousands of Euros spent every week by those seeking treatment.

Please, do not impair the ability of these wonderful Polish vascular doctors to give relief to we who have known no relief for over 150 years, and come from countries not so enlightened as Poland.

I thank you for your consideration.

Dziękuję
My name is not really Johnson. MSed up since 1993
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Postby Edser » Sat Oct 23, 2010 12:34 pm

Good evening TiMS & Rici,
Anna will SKYPE you tomorrow Sunday 25/10/10
Slainte Mo Chara
Edser & Anna

Witaj Ryszard , odezwe sie na skypie jutro
Do uslyszenia
Ania i Edser
Never judge a Book by it's cover.
Edss Before Procedure:6
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Please help! Treatment in Poland is at risk!

Postby BOOP » Sat Oct 23, 2010 12:47 pm

Rici
I just sent you my email to the Proff. Please provide the email address for the ministry of health and I will send a copy to them as well. I hope this helps. This is so cruel. :(

This has now confirmed all beliefs that YES THE MSSs AROUND THE WORLD WILL LOOSE BILLIONS OF DOLLARS BECAUSE WE WILL NO LONGER BE THEIR CASH COWS. It has shown me how evil they have become and THE WORLD NEEDS TO KNOW THIS. In hopes that The MSSs reply with an alternate reason. Which there is none. I dare them to dispute what we all now know. This most recent incidents seals it for me. They want to give poisons that they know will compromise people much more than an Angioplasty can ever do. How HYPOCRITICAL is this. They should be charged with Attempted Murder and for those who have passed using these DMDs charges of Murder is fitting. I am sorry for my rant but this is like malpractice with the OK from the MSSs. I am very scared that if this gets shut down we will have to resort to??????????? HEAVEN HELP US.
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Postby Johnson » Sat Oct 23, 2010 1:41 pm

I also wrote to Minister of Health for Poland - Ewa.Kopacz@sejm.pl

"Pani doktor,

Please excuse my writing in English, I know very little Polish language.

I was treated for Chronic Cerebro-Spinal Venous Insufficiency (CCSVI) in Multiple Sclerosis (MS) in Katowice, Poland by the very talented team of dr. Simka, and dr. Ludigya, and I experienced dramatic relief from my symptoms of MS, which I have suffered for 18 years. As you must know, this is a very safe treatment involving trans-luminal angioplasty (PTA), where a balloon is inflated in the internal jugular vein, or azygous vein, to relieve stenosis, which is thought to cause reflux, and the terrible symptoms of MS. Sometimes a stent is used as well. At the time that I joined the waiting list for the treatment (December 2009), Poland was the only enlightened country where it was possible to receive the treatment. This has changed now, with treatments becoming available in many other countries, such as Bulgaria, India, Egypt, the United States, Costa Rica, Australia, Mexico, and so on. Kuwait has offered the treatment to all of its citizens suffering from CCSVI/MS. But it seems that treatment in Poland is being threatened, as I was notified by the e-mail from a Polish friend;

"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 me so I can collect them and use them to confront both with them.

Thank you for your help!"


During the swine flu uproar of last year, Poland had a voice of reason in you. I have great respect for that position. I was given relief from my MS symptoms in June 2010 in Katowice. I was impressed by the expertise of the doctors that performed the procedure, and I received a great benefit that I could not receive in my own country. The Euromedic Poland team is the most experienced in the world, and people with MS are spending millions of Euro to be treated in Poland. Again, you are a bright light of reason in the world of people who suffer from MS. I trust that your enlightened Ministry of Health will consider the benefits reported by people who have had the procedure before considering the same kind of scare propaganda of neurologists tied to pharmaceutical companies, who seek to have such treatments halted.

Thank you for your attention to this matter.

Dziękuję
My name is not really Johnson. MSed up since 1993
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Postby msdragonslayer » Sat Oct 23, 2010 1:50 pm

HA!! I found you.

Letter sent. Also a copy to Ewa Kopacz at kancelaria@mz.gov.pl I think she is the Minister of Health in Poland
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Postby thisisalex » Sat Oct 23, 2010 2:15 pm

hi Rici

letter sent!

alex
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Postby BrendaReqier » Sat Oct 23, 2010 3:51 pm

A couple of months ago, Mark asked other Canadians for testimonials of their treatments so he could take them to parliament. I started my letter to Poland with how much we appreciated all the work that's been done in Poland and how important it is. Then I asked them to read my testimonial of before and after that I cut and pasted into the letter.
It's important even for those not treated yet to write, tell them why it's imperative that the Polish doctors keep working and keep the studies going.
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Postby cheerleader » Sat Oct 23, 2010 7:11 pm

The correct name of the neurologist should be Dr. Danuta Ryglewicz. His e-mail is Ryglew, but that is not his full name--
http://www.researchgate.net/researcher/ ... _Ryglewicz

I honestly don't see why he would be against CCSVI research or treatment. His specialty is stroke, and he's well-published. I wish we had more information. If someone could please translate this official letter from him, it might help----
link to pdf

cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby PCakes » Sat Oct 23, 2010 8:03 pm

From CCSVI at UBC MS Clinic Facebook page...pretty sure 2006 should be 2010

Jenna Machala POLAND, THE LATEST ABOUT CCSVI - translation of the latest correspondence between Polish College of physician, Ministry of Health and Neurology doctor who is a consultant’s for National. Neurology Association -Prof. Ms Ryglewicz.

"On 23 September 2006, The President of the Supreme Council of the Medical Committee (repres...enting all doctors) has requested an opinion and if needed and action from the Minister of Health regarding the method of the treatment of people who have multiple sclerosis using angioplasty with stenting jugular veins. He also has written a letter asking of the opinion of the consultant’s of National. Neurology-Prof. Ms Ryglewicz who responded to his correspondence on 11 October 2006.

my own trnaslation.
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Re: Please help! Treatment in Poland is at risk!

Postby eric593 » Sat Oct 23, 2010 10:27 pm

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


How do you know this? On what grounds are they trying to 'shut them down'? Do you have some kind of copy of a document or letter that verifies this? Where did you get this information and can it be verified?

I just think before people blindly start sharing personal details of their own treatment, it would be a good idea to have more information and verification of what exactly is going on rather than these vague allegations.
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Re: Please help! Treatment in Poland is at risk!

Postby Rici » Sun Oct 24, 2010 1:20 am

Last edited by Rici on Sun Oct 24, 2010 1:23 am, edited 1 time in total.
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Re: Please help! Treatment in Poland is at risk!

Postby Rici » Sun Oct 24, 2010 1:22 am

eric593 wrote:
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


How do you know this? On what grounds are they trying to 'shut them down'? Do you have some kind of copy of a document or letter that verifies this? Where did you get this information and can it be verified?

I just think before people blindly start sharing personal details of their own treatment, it would be a good idea to have more information and verification of what exactly is going on rather than these vague allegations.

please:
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
Professor Ryglewicz box ryglew@ipin.edu.pl is already full!
Rici
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Postby JohnAm » Sun Oct 24, 2010 2:48 am

I asked the staff at Euromedic in Katowice if they can help in translating the dokument to English. I believe a translation is neccessay to disseminate this information.
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Sent

Postby curmudgeonine » Sun Oct 24, 2010 7:17 am

I sent a letter to both addresses with a blind cc to you, Rici. We HAVE to stop this madness before it is successful and spreads.

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