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MSForum er det helt rette sted at finde yderligere oplysninger om CCSVI og sklerose. Spred budskabet om CCSVI til andre i kender med MS !

Vær opmærksom på at Liberation-proceduren ikke generelt kan kaldes helbredende. Mange får gavn af proceduren, nogle føler sig helbredt, mens enkelte ikke får det bedre. Se statistikken her på MSForum, eller se http://www.ccsvi-tracking.com.

Dette er et fuldstændigt uafhængigt forum, beregnet til at diskutere emner som er relateret til Multipel Sclerose (MS).
Specielt interesserer vi os for ny forskning, som fx indenfor CCSVI.

Vi er IKKE læger her på www.msforum.dk.

Til alle jer mange hundrede gæster vi har hver uge: er I ikke søde at registrere jer, og præsentere jer - på den måde kan vi se hvor mange som virkelig er interesseret i det vi snakker om. Tak.

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Forfatter Emne: Kuwait behandler ALLE sine MS patienter for CCSVI!  (Læst 1668 gange)
Lisa.T
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« Dato: 07 April 2010, 15:56:15 »

Denne mail har lige  været på TIMS:

I have just received a message from Zamboni: the Kuwait government has decided to treat all its 6000 MS patients with angioplasty at the rate of 10 a day and has asked him for technical assistance.
This is the break-through we all were waiting for and, even if it will not benefit MS patients in the western world immediately, it will certainly pave the way for converting sceptics in the future.
GiCi


Tænk sig!! Et land er parat til at behandle ALLE sine MS-patienter!!!! Bare man boede i Kuwait! Men det kan umuligt andet end at give genlyd i den vestlige verden.

Hele tråden er her:

http://www.thisisms.com/ftopicp-102791.html#102791
« Sidste ændring: 07 April 2010, 16:50:28 af hag » Logget

SPMS'er, dx 1997, kørestolsfræser. Har aldrig fået medicin. Selvbedømt EDSS 7. Liberated i Indien d. 8.11.2010 - små bitte forbedringer.
Siden 1.1.2012 på TW's diæt - 100%.
christian
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« Svar #1 Dato: 07 April 2010, 16:47:39 »

HOLD DA K*FT!!!! Jeg er imponeret, og glad og ... alt muligt!

Det er da en udmelding der vil noget, og helt sikkert noget som vil hjælpe alle os der tror og kæmper for CCSVI's accept herhjemme.

Super nyhed Lisa!

Jeg splitter lige nyheden over i sin egen tråd - den er lidt vigtig.

christian
Logget

Atakvis Sklerose, diagnose juni 2009.
Leif
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« Svar #2 Dato: 07 April 2010, 17:05:31 »

Er der hold i dette....... Må det være lidt af en øjen åbner for de danske "konservative" neurologer......... Smiler.   Tror det kan blive lidt af en milepæl i behandlingen af ms patienter for ccsvi, også i DK. på sigt........   Humørgrin

Leif....
Logget

spms. diagnose i 92. Rimelig mobil og arbejder..
Per West
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« Svar #3 Dato: 07 April 2010, 17:34:42 »

Nu vil vi så blive vidne til en fornægtelse af det åbenlyse, siger jeg som djævelens advokat, for hvorfor acceptere noget som der ikke er mange penge i. Hvis ikke jeg var så involveret, så kunne dette blive et underholdende skuespil, når vi nu bliver vidne til medicinalindustriens og scleroseforskeres hårdnakkede afvisninger af den åbentlyse logik. Jeg har forresten stadig ikke fået svar fra Scleroseforeningens ekspertpanel på mit spørgsmål:

Tak for dit spørgsmål. Vi forsøger at besvare dit spørgsmål inden for 3-5 hverdage.

Er det et faktum at sclerosepatienter har et højere indhold af jern i deres hjerner, og er det et faktum at jern skaber et toksisk miljø? Hvis det er et faktum, er det så også et faktum, at dette jern bliver transporteret derind af blodtilstrømning? Hvilke fakta er det så der bevirker, at sclerosepatienter har det forhøjede indhold af jern i deres hjerner?

Venlig hilsen Scleroseforeningen


Håber logikken når at vinde inden jeg mister evnen til at mobilisere  mig.... Tunge
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christian
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« Svar #4 Dato: 07 April 2010, 18:03:35 »

@Leif:

Gici som har har skrevet det på thisisms.com var den første patient som blev behandlet af dr Simka (så vidt jeg ved) - så han har været med fra starten. Jeg tror på ham  Smiley

christian
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Atakvis Sklerose, diagnose juni 2009.
Lisa.T
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« Svar #5 Dato: 07 April 2010, 18:32:41 »

Christian, der tog du godt nok helt og aldeles måsen på  mig! Jeg troede jeg var gået helt og komplet gak gak, og var blevet dement og dybt senil på rekordtid. Jeg kunne overhovedet ikke huske at jeg havde oprettet tråden under den overskrift, og kunne slet ikke genkende  den.....

Men det er jo dig! Pyhhhh , så er jeg rolig igen.

Men, når det så er sagt, så er  jeg på en eller anden måde ikke overbevist før jeg ser noget officielt et eller andet sted. Selv om de arbejder nonstop 5 dage om ugen, så vil det tage omkring 3 år at få alle igennem. Helle for ikke at være sidst. På en måde så tvivler jeg.

Og det står i mailen, at Zamboni vil hjælpe. Hmmm. jeg er sikker på han har nok at gøre i sin egen klinik.

Men selvfølgelig, man skal starte et sted inden man kan blive færdig.

Men jeg vil altså høre mere inden jeg hopper højt.
Logget

SPMS'er, dx 1997, kørestolsfræser. Har aldrig fået medicin. Selvbedømt EDSS 7. Liberated i Indien d. 8.11.2010 - små bitte forbedringer.
Siden 1.1.2012 på TW's diæt - 100%.
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« Svar #6 Dato: 07 April 2010, 18:52:15 »

Undskyld Lisa - håber ikke du faldt ned af stolen  Grin

Jeg har lige checket - det er ikke en aprilsnar - i så fald er den forsinket (nyheden er fra idag d. 7/4).

christian
Logget

Atakvis Sklerose, diagnose juni 2009.
Lisa.T
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« Svar #7 Dato: 07 April 2010, 18:58:50 »

Dette er på FB:

http://www.facebook.com/home.php#!/pages/Kuwait/Kuwait-CCSVIMS-starting-community-to-MS-Liberation-research-and-treatment/261778096230

og dette:

Congratulation Kuwait , Minister of health on SkopTV announce the starting of Liberation procedure officially . Thanks God and hope every where soon. Its MS right to have open veins like all of us.

Matematik-time:

From CCSVI at UBC MS Clinic - Information and Support: Math time! ~2,300,000 people with MS worldwide; CCSVI testing, treatment, and followup takes ~10 hrs = 20,3000,000 hrs. Each DR can do ~2000 hrs/year, so about 10,150 "Dr years" are needed.

If 500 Drs are fully trained and dedicate their ENTIRE practice to CCSVI, it will take >20 yrs to treat everyone. Question: What i...s the best way to get this huge surge of people needing testing and treatment through the system?

Det vil tage mange ÅR at behandle alle, også selv om alle går i gang nu.

Vi bliver gamle inden det er så vidt, og til den tid er jeg ligeglad - for jeg er død!!
Logget

SPMS'er, dx 1997, kørestolsfræser. Har aldrig fået medicin. Selvbedømt EDSS 7. Liberated i Indien d. 8.11.2010 - små bitte forbedringer.
Siden 1.1.2012 på TW's diæt - 100%.
Per West
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« Svar #8 Dato: 07 April 2010, 19:12:01 »

Hun rør på sig... hende LisaT


danke

detusche Privat kassen ja, bei den gesetzlichen entscheiden diese individuell

mfg

thomas J> voglQuoting pwm <PWM@pc.dk>:

> Sehr geehrter Hr. Dr. Vogl.
>
> Herzlichen Dank für ein sehr informatives Gespräch bei Ihnen am
> 29.03.2010.
>
> Können Sie uns darüber aufklären, ob deutsche CCSVI-Patienten ihre
> MR-Scannung sowie ihre Operation von der deutschen Krankenkasse
> bezahlt bekommen?
>
> Und ist diese Operation in Deutschland anerkannt als "Eksperimentale
> Behandlung" ?
>
>
>
> Mit freundlichen Grüssen
>
> Per West


Was pocker... Es hopt eben die Christian hast das hoppen zerbrocken.

Ich verfaren mir wieder... Tunge
Logget
Per West
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« Svar #9 Dato: 07 April 2010, 19:16:00 »

Oversættelse: Den lovpligtige sygeforsikring i Germany accepterer individuelt om de anerkender CCSVI som eksperimentel behandling. og da vi er EU-borgere, burde dette være et meget godt argument over for sundhedsstyrelsen til også at få behandlingen accepteret herhjemme.

Så det kan være vi alligevel skal lege indkøbsvogn nede ins Frankfurt, LisaT Smiley

Logget
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« Svar #10 Dato: 07 April 2010, 20:04:54 »

http://www.facebook.com/home.php?#!/notes/ccsvi-in-multiple-sclerosis/paolo-zamboni-and-kuwait-government-working-together/383093497210

Kuwait og Zamboni i samarbejde....... Hmm. Tænker lige... Var det egentlig ikke mere nærliggende såfremt det var Dk. han skulle starte med at hjæpe på vej, når det handler om miljø krav osv. plejer vi da altid at værre år foran alle andre uanset hvad omkostningerne er.........

Hilsen Leif......
Logget

spms. diagnose i 92. Rimelig mobil og arbejder..
tip
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« Svar #11 Dato: 07 April 2010, 20:08:28 »

wauv my head is spinning. Der er jo nyheder hele tiden. Hvor er der meget at læse, meget at tænke over og tage stilling til.
Logget
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« Svar #12 Dato: 07 April 2010, 21:07:23 »

øøhhh leif.. hvorfor et Danmark lever du i...Spørgsmålstegn det er sq mange år siden at Danmark har været foran... nu er vi bare medløbere....
Logget

ms type : ved ikke ::: diagnose juni 2007. EDSS ca 4 (måske) har fået liberation operation
Lisa.T
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« Svar #13 Dato: 07 April 2010, 21:37:42 »

Den er go' nok - DET ER NU OFFICIELT!!!!!!!

http://www.kuwaittimes.net/read_news.php?newsid=MTE5OTk0MTY5MA==
Logget

SPMS'er, dx 1997, kørestolsfræser. Har aldrig fået medicin. Selvbedømt EDSS 7. Liberated i Indien d. 8.11.2010 - små bitte forbedringer.
Siden 1.1.2012 på TW's diæt - 100%.
Lisa.T
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« Svar #14 Dato: 07 April 2010, 22:05:17 »

Fra FB

:

CCSVI treatment will begin for Kuwait MS patients.
This is from GiCi, the cardiac surgeon who has been liberated, and is friends with Dr. Zamboni- GiCi on the ThisIsMS.com

"I have just received a message from Zamboni: the Kuwait government has decided to treat all its 6000 MS patients with angioplasty at the rate of 10 a day and has asked him for technical assistance.
This is the break-through we all were waiting for and, even if it will not benefit MS patients in the western world immediately, it will certainly pave the way for converting sceptics in the future.
GiCi"

Gianfranco Campalani (GiCi) http://news.bbc.co.uk/2/hi/health/8510437.stm
is giving us inside information, directly from Dr. Zamboni that all MS patients will be treated. I did some digging and found some press out of Kuwait which is more cautionary, but still VERY encouraging. As I've learned from the press in the US, the whole story is not always told....

From The Kuwait Times-
http://www.kuwaittimes.net/read_news.php?newsid=MTE5OTk0MTY5MA==

Kuwaiti urged to launch research program ASAP
Published Date: April 07, 2010
By Ahmad Saeid, Staff Writer

KUWAIT: A Kuwaiti doctor and academic has urged the Ministry of Health to take the necessary steps to launch a research program to investigate the possibility of venous catheterization being helpful in treating Multiple Sclerosis (MS) symptoms. Speaking during a seminar held at the Arab Media Forum headquarters in Yarmouk on Monday evening, Assistant Kuwait University Professor Dr. Tariq Sinan said that the catheterization procedure is completely safe, with very few risks.

It only takes around 15 minutes, and it reduces the [MS] symptoms drastically," he said, adding that neither the health minister or his deputy have suggested that the procedure should be completely stopped. "All they said is that we should hold back a little bit until we are sure this procedure is safe, and I agree with them," he explained.

Dr. Sinan explained that Multiple Sclerosis is an incurable disease that usually occurs in young adults, which is caused by an as-yet unexplained condition, wherein the human immune system attacks nervous system. It occurs more in females than male, and its symptoms include visual problems, fatigue, muscle weakness and other nervous system related symptoms.

So far there is no known cure for this fatal disease," said Dr. Sinan. "There was, however an experiment by an Italian doctor that found a correlation between many symptoms of the disease and narrowed neck veins, and many of those symptoms can be removed by a simple procedure to widen the neck veins." In many cases where this procedure has been carried out, he said, patients' conditions improved enormously.

Amira Al-Mashhoody, a Kuwaiti woman with MS, was extremely positive about the treatment's benefits, telling the Kuwait Times, "We were so desperate to find a solution for our problem that we were constantly browsing the internet and following all the research about MS round the world. We found out that this was done in Poland, and that the results were amazing," she said.

Al-Mashhoody, who is the vice president of the Kuwaiti MS Patients' Association said that after finding out about the amazing results of this procedure, a number of association members visited Dr. Abdulaziz Al-Muzaini, who formed a team of doctors consisting of Dr. Sinan and Dr. Hussain Safar, who visited the health minister and explained to him that the procedure is safe, simple and extremely beneficial.

After receiving the permission of the minister to carry out the procedure, doctors needed someone to volunteer to be the first neck catheter recipient in Kuwait, with Amira Al-Mashhoody decided to volunteer herself.

I used to be very depressed, angry, and my life was miserable," said Al-Mashhoody, "I wasn't able to do anything alone, and my daughter used to help me dress, but right after the procedure I felt that my arms and legs were warmer, and I was able to dress myself alone and leave the room without help.

She continued, "Since then, and until the ministry's decision to halt these procedures, 12 Kuwaiti patients have gone through the catheterization process and they're all in great shape and feeling much better than they used to.

Muna Al-Musairea' was one of the 12 patients who went through the procedure. She said that during the catheterization operation, she was asking the doctors whether the level of lighting in the room had been turned up because her vision improved immediately.

A neurologist was standing next to me, and he said that he didn't believe what I was saying!" she noted. Dr. Sinan noted that many neurologists don't believe that vein width is related to MS symptoms, explaining that this disagreement was the reason behind the ministry's ordering the suspension of the catheterization procedures.

They asked to stop these 'operations' until thorough research is carried out to prove their safety, and their effects on patients' health," he said. The prominent doctor added that doctors on both sides are concerned about the patients' wellbeing, emphasizing that differences of opinion between doctors don't necessarily mean that one party is wrong and the other is right.

Dr. Sinan asserted that the MoH is expected to approve the launch of a research program into the benefits of venous catheterization in MS treatment within the next few days. He urged the ministry to issue its decision on the matter and form the necessary investigative committee as quickly as possible.

Time is always working against MS patients and, in some cases, the damage is completely irreversible, so delay in this regard will cost many people part of their lives," he stressed.

Here is a press release from Kuwait:

Kuwait to resume conducting MS surgeries
Health 4/5/2010 7:52:00 PM

By Mubarak Al-Hajeri KUWAIT, April 5 (KUNA) -- The Ministry of Health will resume surgeries for Multiple Sclerosis (MS) in a few days following approval of a relevant protocol for treating this disease.
Health Minister Dr. Hilal Al-Sayer said in a statement to KUNA on Monday the operations would be conducted after a written approval by the patients and informing them on possible side-effects of the operation.
He indicated that this surgery is still classified in the testing stage, has not been accredited by the relevant international health authorities and warrants further researches to ensure that the patients undergoing such surgeries would not suffer from serious side-effects.
Dr. Paolo Zamboni, an Italian vascular surgeon, devised an experimental treatment similar to angioplasty, which involves removing the blockage in the veins that carry blood to and from the brain. Zamboni gained international attention after he published a study in 2009 that suggested the treatment was highly successful in reducing MS symptoms.
However, some experts have expressed concern that the surgery may cause clots in the brain.
In general, people with MS can experience partial or complete loss of any function that is controlled by, or passes through, the brain or spinal cord. (end) mah.rf.rk KUNA 051952 Apr 10NNNN

http://www.kuna.net.kw/NewsAgenciesPublicSite/ArticleDetails.aspx?id=2073637&Language=en

This is from the Kuwait MS Liberation Facebook page:
"Congratulations, Kuwait , Minister of health on SkopTV announce the starting of Liberation procedure officially . Thanks God and hope every where soon. Its MS right to have open veins like all of us."

Their campaign began with Kuwait residents who travelled to Poland for treatment and came home and petitioned the government for help. Congratulations!
http://www.facebook.com/pages/Kuwait/Kuwait-CCSVIMS-starting-community-to-MS-Liberation-research-and-treatment/261778096230

I'm sure the Kuwait doctors will be writing up their research and publishing results. We can only hope that our own countries will see the merit behind treatment for venous obstruction and begin similar programs! Joan
« Sidste ændring: 31 August 2010, 12:20:30 af hag » Logget

SPMS'er, dx 1997, kørestolsfræser. Har aldrig fået medicin. Selvbedømt EDSS 7. Liberated i Indien d. 8.11.2010 - små bitte forbedringer.
Siden 1.1.2012 på TW's diæt - 100%.
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