I could not agree more with you Maria and yes this should NOT be happening! Thank you for your video's this one expresses the frustration we all feel in the MS community that cannot have the procedure done locally. The good news is that is changing little by little with help from people such as yourself.
GREAT GOING MARIA !!!!! My first call? I got a lecture from an IR passionately declaring ' I won't participate in the MURDER of MS patients!!!!!!!" and incorrectly cited 3 deaths from "Liberation'...this was in July... Hopefully, NOW he has SEEN the Light of Truth ...CCSVI Liberation Rx SAVES Lives !!!!
It was magnificent to see your spirited fight to beat this f'n condition. I was diagnosed in 2003 (now 31 in 2010) and at the first few years it didn't really affect me, but the last few years it has. After being disillusioned on hitting brick wall after brick wall in the early years, your frustration echoes what I felt, but your willpower to keep going is an inspiration.
Great effort for today. If they don't call back keep calling. You'll get there - you will, because you have such a STRONG will. And you will find a place that will then help others. No doubt in my mind. Enjoy your movie. Kerri x
Ugh, I can feel your frustrations from way over here. The day when getting treatment is EASY..will be a good good day. I hope its not that far away. You're right, it doesn't seem ethical for them to drag their feet when so many young people are involved..not to mention the old an' crispy wrinklies like me! All the best Maria, hope you hear something positive soon! Gav
You're beautiful when you're angry ;-) I hope you hear good news soon. Very well said about the outrageous stats of young people getting MS. It makes me angry and sad too. I can hear the blood whooshing in the back of my neck right now...
Great video Maria!! I think you will get a call back. When I called my IR's office the girl had no idea, so I spoke to the nurse. She had no idea but she was interested and took all the info I gave her and said she would talk to the doc. She called me back 2 hours later and yes he knew all about and they could do the testing and the procedure. I had my angio on the 14th. It has only been 3 days and I have not seen any improvement yet. But I am hopeful! Good luck!!!! Andrea
By the way, this is by far the most entertaining thing I have seen for a long time. I was angry driving home today thinking about the people who are going to die or progress in their illness to the point of severe or total disablity. They say it is for "science" that they must trial this. If they had a shred of humanity left (they lost it when they became prostitutes to the pharmaceutical industry) they would push it through on the grounds of compassion. Seriously. God will get 'em.
Christodolou surname meaning. From the greek roots meaning "SERVANT of CHRIST (Messiah)". Methinks it fits you nicely :) I recognize Him within you, so it is a very fitting surname. I was actually thinking about making a video about the very subject you addressed here. Thank you for saving me the work. Love ya, kid. Mark
I am now 35 ,I was dx when I was 24 -it sucks but I'm not so bad to be honest-I use a rollator but I get by! I am on Rebif and LDN- have you heard of LDN? rocks my world! lol Low Dose Naltrexone .. It will help you and keep you sane until CCSVI reaches the real world..good luck Maria!
Keep trying, one day this will be an acceptable treatment, but for now, looks like you gotta fight for it. They just shut the Dr down who did my procedure, it's a big risk for them to even do it, at this time, but there are Dr's out there that are willing to take that chance. Best of luck :)
Maria, I have run into the same thing! And in Buffalo, NY where the study was done. Where do you live? I found a place in Albany. I actually am going for a consult Monday Sept 20th. Good luck in your search!
As I said in my video, the MD who liberated me had not heard of CCSVI until a persistent MS patient MADE HIM LEARN ABOUT IT SO HE COULD DO IT! He does them daily now. Go change the world What did you say your name was Jesusdidgeroo?
I could not agree more with you Maria and yes this should NOT be happening!
Thank you for your video's this one expresses the frustration we all feel in the MS community that cannot have the procedure done locally.
The good news is that is changing little by little with help from people such as yourself.
GREAT GOING MARIA !!!!!
My first call? I got a lecture from an IR passionately declaring ' I won't participate in the MURDER of MS patients!!!!!!!" and incorrectly cited 3 deaths from "Liberation'...this was in July...
Hopefully, NOW he has SEEN the Light of Truth ...CCSVI Liberation Rx SAVES Lives !!!!
You have just earned a headline at the Maryland USA MS CCSVI Group. :) posting your video now. This is classic. Good job Maria! :-D
It was magnificent to see your spirited fight to beat this f'n condition. I was diagnosed in 2003 (now 31 in 2010) and at the first few years it didn't really affect me, but the last few years it has. After being disillusioned on hitting brick wall after brick wall in the early years, your frustration echoes what I felt, but your willpower to keep going is an inspiration.
Great effort for today. If they don't call back keep calling. You'll get there - you will, because you have such a STRONG will. And you will find a place that will then help others. No doubt in my mind. Enjoy your movie. Kerri x
Ugh, I can feel your frustrations from way over here. The day when getting treatment is EASY..will be a good good day. I hope its not that far away. You're right, it doesn't seem ethical for them to drag their feet when so many young people are involved..not to mention the old an' crispy wrinklies like me!
All the best Maria, hope you hear something positive soon!
Gav
You're beautiful when you're angry ;-) I hope you hear good news soon. Very well said about the outrageous stats of young people getting MS. It makes me angry and sad too. I can hear the blood whooshing in the back of my neck right now...
Great video Maria!! I think you will get a call back. When I called my IR's office the girl had no idea, so I spoke to the nurse. She had no idea but she was interested and took all the info I gave her and said she would talk to the doc. She called me back 2 hours later and yes he knew all about and they could do the testing and the procedure.
I had my angio on the 14th. It has only been 3 days and I have not seen any improvement yet. But I am hopeful!
Good luck!!!!
Andrea
I cant feel the anger Maria.. Hope evrything will soon work out for all MS sufferes and CCSVI.. we just have to keep fighting..
By the way, this is by far the most entertaining thing I have seen for a long time.
I was angry driving home today thinking about the people who are going to die or progress in their illness to the point of severe or total disablity.
They say it is for "science" that they must trial this.
If they had a shred of humanity left (they lost it when they became prostitutes to the pharmaceutical industry) they would push it through on the grounds of compassion.
Seriously. God will get 'em.
Dont stop fighting! Youre awesome, you give me so much hope!
Maria,
I'm 25 and am right there with you!
Tori
I stopped calling after 38 :( am giving up for awhile. Great job Maria
Go on gurlll!!!
Christodolou surname meaning. From the greek roots meaning "SERVANT of CHRIST (Messiah)".
Methinks it fits you nicely :)
I recognize Him within you, so it is a very fitting surname.
I was actually thinking about making a video about the very subject you addressed here.
Thank you for saving me the work.
Love ya, kid.
Mark
@sandyCanada56 I have to agree with Sandy, Maria it was a great video!! I always wondered how to prononce your last name ;-)
I am now 35 ,I was dx when I was 24 -it sucks but I'm not so bad to be honest-I use a rollator but I get by! I am on Rebif and LDN- have you heard of LDN? rocks my world! lol Low Dose Naltrexone .. It will help you and keep you sane until CCSVI reaches the real world..good luck Maria!
Keep trying, one day this will be an acceptable treatment, but for now, looks like you gotta fight for it. They just shut the Dr down who did my procedure, it's a big risk for them to even do it, at this time, but there are Dr's out there that are willing to take that chance. Best of luck :)
Maria, I have run into the same thing! And in Buffalo, NY where the study was done. Where do you live? I found a place in Albany. I actually am going for a consult Monday Sept 20th. Good luck in your search!
As I said in my video, the MD who liberated me had not heard of CCSVI until a persistent MS patient MADE HIM LEARN ABOUT IT SO HE COULD DO IT!
He does them daily now.
Go change the world
What did you say your name was Jesusdidgeroo?
How is it going?