CCSVI in Bulgaria

livabird · Post by **livabird** » Mon Mar 08, 2010 10:34 pm

THANKS COLA. I HAD RAISED FOOT AS WELL. NOT GOING TO DO THAT AGAIN. WOKE UP DEELING LIKE A PRETZEL.

Vhoenecke · Post by **Vhoenecke** » Tue Mar 09, 2010 5:49 am

Livabird, your bed should look like a see saw when the bottom is down and the top up. This allows the blood to flow out of the brain. I have tried a million things: copaxone, chiropractor, massage. This is the only thing that has helped me thus far. Liberation in June will hopefully do the same.

Val

livabird · Post by **livabird** » Tue Mar 09, 2010 7:45 am

THANKS VAL. I AM VERY LOW AT THE MOMENT. HAVING PROBLEMS WITH EVERYTHING. I THINK I MUST HAVE A BUG MY BLADDER TENDS TO REALLY ACT UP THEN. I EITHER GO IN APRIL OR JUNE DEPENDING ON WHETHER IT IS POLAND OR BULGARIA. WHICHEVER IS FIRST. IT REALLY HELPS TO BE ON HERE AS PEOPLE UNDERSTAND AND I AM VERY LOW RIGHT NOW.

pinksapphire · Post by **pinksapphire** » Tue Mar 09, 2010 8:18 am

livabird wrote:THANKS VAL. I AM VERY LOW AT THE MOMENT. HAVING PROBLEMS WITH EVERYTHING. I THINK I MUST HAVE A BUG MY BLADDER TENDS TO REALLY ACT UP THEN. I EITHER GO IN APRIL OR JUNE DEPENDING ON WHETHER IT IS POLAND OR BULGARIA. WHICHEVER IS FIRST. IT REALLY HELPS TO BE ON HERE AS PEOPLE UNDERSTAND AND I AM VERY LOW RIGHT NOW.

Livabird,

I woke up this morning really depressed. I know I shouldn't be because I have an appointment for April 28th in Bulgaria and a wonderful husband that is my rock. Why am I so nervous? I'm not scared to fly and I've always wanted to go to Europe. I think it's been information overload since this broke in November. My life and my husband's life is consumed by this. Everything is happening sooooo fast. Hard to take it in. Then this thought is always in the back of my mind. What if the procedure doesn't do anything? What if I'm still the same?
Then I look at the positive stories post procedure and try to keep an upbeat attitude. My head is constantly spinning! $%#@
Sorry had to vent.

alanbrowne · Post by **alanbrowne** » Tue Mar 09, 2010 8:26 am

pinksapphire wrote:Livabird,
I woke up this morning really depressed. I know I shouldn't be because I have an appointment for April 28th in Bulgaria and a wonderful husband that is my rock. Why am I so nervous? I'm not scared to fly and I've always wanted to go to Europe. I think it's been information overload since this broke in November. My life and my husband's life is consumed by this. Everything is happening sooooo fast. Hard to take it in. Then this thought is always in the back of my mind. What if the procedure doesn't do anything? What if I'm still the same?
Then I look at the positive stories post procedure and try to keep an upbeat attitude. My head is constantly spinning! $%#@
Sorry had to vent.

Hi,
Please don't apologise, I think we are all feeling the same.
I only found out about CCSVI 3 weeks ago, since then it has taken over my life.
Since then I now have an appointment in Frankfurt at the end of the month and a provisional appointment in Bulgaria also.
I am lucky enough to have a very very understanding and supporting wife who keeps me going through the stressful times, but it still gets you down sometimes

Be happy, this could be the turning point in your life

Take care,
Alan

livabird · Post by **livabird** » Tue Mar 09, 2010 8:32 am

PINK I FEEL THE SAME AM I GETTING MY HOPES UP AND NOTHING WILL HAPPEN. I AM ON OVERLOAD AS WELL. I HAVE READ PROBABLY TOO MUCH NOW AND NEED TO JUST TAKE IT IN. I KEEP READING IT DOESN'T DO ANYTHING FOR PPMS BUT THEN THERE ARE LESS OF US SO IT WOULD BE HARD TO KNOW. THE WAY I LOOK AT IT WE SHOULDN'T HAVE BLOCKAGES NORMALLY IF THEY ARE CLEARED SOMETHING HAS TO HAPPEN. THIS PLACE IS FOR US TO FEEL WE CAN BE OURSELVES AND EVERYONE WILL UNDERSTAND. WE NEED TO STAY POSITIVE EVEN IF SOMETIMES IT SEEMS HOPELESS. IT HAS TO DO SOMETHING. AT ONETIME I WANTED A LOT NOW TO BE ABLE TO HOLD MY BLADDER GET OUT OF BED EASIER AND GO OUT AT LEAST ONCE A MONTH AND FEEL NOT SICK IS WHAT I WANT. BUT IF I GET MORE THAT WOULD BE SUCH A BONUS. LOOK FORWARD TO YOUR TRIP IT WILL MAKE A DIFFERENCE IN YOUR LIFE. JUST DON'T EXPECT TOO MUCH.

AndrewKFletcher · Post by **AndrewKFletcher** » Tue Mar 09, 2010 8:47 am

Livabird

Please keep a journal noting all changes and dating them when your bed is tilted correctly.

PPMS and SPMS have both responded well to I.T.

pinksapphire · Post by **pinksapphire** » Tue Mar 09, 2010 9:17 am

Thank you Alan & Livabird
I know there is some light at the end of the tunnel, we just have to stay focused and STRONG. We all get off track sometimes. I know I have support on here as well. It does help!

livabird · Post by **livabird** » Tue Mar 09, 2010 9:38 am

THAT IS WHAT IS GREAT HERE. WE ALL UNDERSTAND I APPRECIATE WHAT WE ARE ALL GOING THROUGH. THIS PLACE IS A GODSEND FOR ME AS MY FAMILY ARE SUPPORTIVE BE WE CAN SOMETIMES GET IN A DARK PLACE THAT NOONE BUT A FELLOW MSER UNDERSTANDS. BEFORE CCSVI I WAS CONSIDERING GIVING UP WHAT WAS THE POINT OF EXISTING ANYMORE. IT IS A DEFINITE LIFELINE AND ALL THE SUGESTIONS ON HERE HAVE BEEN SO HELPFUL. I CAN HONESTLY SAY I FEEL I HAVE MET SOME WONDERFUL FRIENDS EVEN IF IT IS VIRTUAL. THANK YOU FOR MAKING ME FEEL I BELONG SOMEWHERE.

pollywogsis · Post by **pollywogsis** » Tue Mar 09, 2010 12:47 pm

Hi everyone,

Sorry I have been away for a while. I just recently heard that India has starting performing the surgeries. I have to go to India for my brother's wedding so I think since I'm going to be there anyway I will probably look into having the surgery done in India. I have all my testing set up for March 13, the day I arrive.

I don't know how easy it is going to be to get Internet access. But I will try to keep everyone posted as often as I can.

Keep your heads up everyone and just know that we are all in this together.
I think all of us have fears that the surgery will not be successful but I just keep thinking that any improvement will be better than where we are now.

Wishing everyone the very best until my return.
PWS

livabird · Post by **livabird** » Tue Mar 09, 2010 12:54 pm

SAFE TRIP POLLY. I HOPE EVERYTHING GOES WELL. TAKE CARE.

AnnaP · Post by **AnnaP** » Tue Mar 09, 2010 2:37 pm

You are so right about being in this together. Thank God for this forum where everyone understands.

Have a safe trip and good luck!

Anna

Vhoenecke · Post by **Vhoenecke** » Tue Mar 09, 2010 11:02 pm

Have a safe trip Poly, I do agree with the information overload and the high stress levels. That's why we are seeing some people getting mad at others on this site and FB. We need to be patient with each other. I too have been very down with all of the stress but I am excited too. Hard to explain to someone that is not going through this. I am blessed to have you all.

robob · Post by **robob** » Wed Mar 10, 2010 12:50 pm

Hello everyone. I've been reading this forum for a few weeks now. My wife, Sarah was diagnosed just before Christmas and our life has been topsy turvey since.

I know and appreciate what you have all been through in diagnosis etc. so respect that you understand what we are going through also.

We've been given a provisional appointment in Bulgaria in June and are living for the confirmation of that appointment. I promise that I will document every aspect of every part of this to try and help answer some of the questions I myself have been asking since I found out about the liberation treatment.

Firstly, we have the provisional appointment and should here the actual date sometime this month.

Secondly, the Bulgarian language...First, I thought it was Russian so began learning, then heard that it is more polite to speak German, then found out that most speak English anyway. The truth of this, I cannot verify.

Thirdly, if you are worried (in the UK) about getting your scans and documents etc. well, we asked today. Whilst there may be a charge, it is possible to get them. If not, I will provide commentary as to how we overcome this.

Fourthly, I need to find out how the UK persons secure the required insurances per the pre-requisites.

Good luck everyone.

Robob.

Vhoenecke · Post by **Vhoenecke** » Wed Mar 10, 2010 12:57 pm

Hi Robob, welcome to the site and sorry your wife has to go through this disease. Better now though that our options before. I too will be in Bulgaria in June. I will have my brother with me whom I call Mr. Language. Let me know when you hear a date and if it is the same time maybe we can meet up.

Val

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CCSVI in Bulgaria

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