This Is MS Multiple Sclerosis Knowledge & Support Community

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

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

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

Val

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

thanks for the info re. insurance, livabird! I've been wondering about that too.

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.

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.

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.

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

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.

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

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.

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.

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

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