CCSVI in Bulgaria

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.
User avatar
livabird
Family Elder
Posts: 344
Joined: Tue Jan 26, 2010 3:00 pm
Location: northampton, uk
Contact:

Post by livabird »

THANK YOU FOR INFO CHRISTOPHE. IT IS JUST SO MANY ARE TRYING TO STOP THIS AND CONVINCE PEOPLE IT IS RIDICULOUS. IT IS GOOD THERE IS A DR. F IN FRANCE.

LIVA
User avatar
livabird
Family Elder
Posts: 344
Joined: Tue Jan 26, 2010 3:00 pm
Location: northampton, uk
Contact:

Post by livabird »

ABOUT INSURANCE. MY HUSBAND EMAILED BULGARIA. IF YOU ARE PAYING IN CASH YOU DON'T NEED IT. IT IS JUST IF YOU ARE PAYING THROUGH A PLAN WHICH AS YOU ALL KNOW ISN'T POSSIBLE. NO INSURANCE WOULD COVER IT. SO YOU DON'T NEED INSURANCE.

LIVA
User avatar
Vhoenecke
Family Elder
Posts: 332
Joined: Sat Dec 12, 2009 3:00 pm
Location: Rosetown, Canada
Contact:

Post by Vhoenecke »

Thanks for looking into it Livabird, now I sit and wait (im)patiently for a date. :?

Val
User avatar
livabird
Family Elder
Posts: 344
Joined: Tue Jan 26, 2010 3:00 pm
Location: northampton, uk
Contact:

Post by livabird »

I HAVE POLAND AGAIN PROBABLY AT THE END OF MAY. I WOULD LIKE TO GO THERE AS I THINK DR. SIMKA PREFERS NOT STENTING AND I AM SO UNSURE ABOUT IT. NOT SURE IF DR. G IS REALLY INTO STENTING SO A BIT NERVOUS.

TAKE CARE,

LIVA
User avatar
colapesce
Family Elder
Posts: 156
Joined: Thu Dec 10, 2009 3:00 pm
Location: London, UK
Contact:

Post by colapesce »

thanks for the info re. insurance, livabird! I've been wondering about that too.
User avatar
livabird
Family Elder
Posts: 344
Joined: Tue Jan 26, 2010 3:00 pm
Location: northampton, uk
Contact:

Post by livabird »

NO PROB COLA. NO WE ARE ALL JUST WAITING FOR OUR DATES. I REALLY WISH I COULD BE COMPLETELY OUT DURING THE PROCEDURE. JUST THINKING ABOUT IT IS FREAKING ME OUT. YICKERS.
User avatar
livabird
Family Elder
Posts: 344
Joined: Tue Jan 26, 2010 3:00 pm
Location: northampton, uk
Contact:

Post by livabird »

GOSH I JUST LOOKED UP THE STATUS FOR THE UK ZAMBONI TREATMENT PETITION. IT HAS BEEN REJECTED BECAUSE THERE S NOT ENOUGH INFO ABOUT IT. WHAT A CROCK I AM BOILING MAD NOW. FOR GOODNESS SAKE UNTIL MORE PEOPLE ARE TREATED WERE CAN INFO COME FROM WE ARE REALLY STUCK BETWEEN A ROCK AND A HARD PLACE.
User avatar
annad
Family Elder
Posts: 207
Joined: Sat Nov 21, 2009 3:00 pm
Location: Ontario, Canada
Contact:

Post by annad »

That's so disappointing but not surprising. I think we'll be seeing that reason more and more as we have from the beginning. It's the best excuse they have.
:(
User avatar
Vhoenecke
Family Elder
Posts: 332
Joined: Sat Dec 12, 2009 3:00 pm
Location: Rosetown, Canada
Contact:

Post by Vhoenecke »

We will all have to come back and let the media know of our improvements and that our gov. and health care systems are letting millions of people down.

Val
User avatar
livabird
Family Elder
Posts: 344
Joined: Tue Jan 26, 2010 3:00 pm
Location: northampton, uk
Contact:

Post by livabird »

DARN TOOTIN VAL. WE ARE DOING THE RESEARCH AND TRIAL. WE SHOULD ALL GET PAID. ISN'T IT NEGLIGENCE TO KEEP A POSSIBLE TREATMENT AWAY FROM SUFFERS. WE SHOULD BE ABLE TO SUE FOR ALL THE BAD DRUGS FASTTRACKED TO TREAT US ALL THE MISDIAGNOSES AND SUFFERING ALOT HAVE NEEDLESSLY GONE THROUGH. FOR PEATS SAKE IF THEY CAN HAVE KILLER DRUGS LIKE TYSZABRI PARDON MY SPELLING WHY CAN'T THIS TREATMENT BE GIVEN A FAIR CHANCE. IT ALL BOILS DOWN TO BIG BUSINESS PROFIT. WE AREN'T NUMBERS WE ARE HUMAN BEINGS.
User avatar
Vhoenecke
Family Elder
Posts: 332
Joined: Sat Dec 12, 2009 3:00 pm
Location: Rosetown, Canada
Contact:

Post by Vhoenecke »

But on paper and the kickbacks we are numbers. Numbers of dollars. Everyone pays lip service to finding cures or big non-drug treatments but when they get hit in the face with one (CCSVI) they run.

Val
User avatar
livabird
Family Elder
Posts: 344
Joined: Tue Jan 26, 2010 3:00 pm
Location: northampton, uk
Contact:

Post by livabird »

BOTTOM LINE SINCE MS HAS MANY SYMPTOMS MANY DRUGS CAN BE USED FOR EACH SUFFERER. LOTS OF MONEY. IF WE WERE CURED WERE WOULD THAT LEAVE MS SOCIETIES THAT GET RESEARCH MONEY AND DRUG COMPANIES THAT MAKE SO MUCH MONEY. I AM SURE OTHER DISEASES LIKE PARKINSON'S, EPILILEPSY GO THROUGH THE SAME STUFF. EACH DISEASE NEEDS ADVOCATES TO FIGHT FOR OUR RIGHTS. WE REALLY NEED LEGAL REPRESENTATION. IT IS TOO BAD MY UNCLE IS DEAD HE WAS WORKING ON HEALTHCARE REFORMS HIGH UP IN THE GOVERNMENT. HE WAS A BARRISTER AND WORKED WITH THE WORLD HEALTH ORGANISATION.
User avatar
robob
Getting to Know You...
Posts: 15
Joined: Tue Mar 09, 2010 3:00 pm

Post by robob »

Has ANYONE got their date in Bulgaria yet? We were told we would be told about our appointment date for June sometime in March but have heard nothing yet.

very frustrating, we need something to hang on to.
User avatar
Vhoenecke
Family Elder
Posts: 332
Joined: Sat Dec 12, 2009 3:00 pm
Location: Rosetown, Canada
Contact:

Post by Vhoenecke »

I have the same concerns as you but we are just in the middle of March. I too was told June would be my month. Come on this thread when you hear and I will do the same.

Val
User avatar
livabird
Family Elder
Posts: 344
Joined: Tue Jan 26, 2010 3:00 pm
Location: northampton, uk
Contact:

Post by livabird »

WE ARE ALL IN THE SAME BOAT ROBOB. YOU WILL HEAR SOON PROBABLY. KEEP YOUR FAITH. IT IS FRUSTRATING BUT WILL BE WORTH IT IN THE END. IS YOUR WIFE ON LDN AND HAVE YOU TRIED ELEVATED BED THEAPY THESE COULD HELP WHILE YOU ARE WAITING.

LIVA
Post Reply

Return to “Chronic Cerebrospinal Venous Insufficiency (CCSVI)”