check out some of my pics

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

Postby Johnson » Fri May 14, 2010 5:21 pm

costumes, Thanks for the pictures, and the blog rant. I like your style. I hope things pick up speed for you. I'm rooting for you, along with everyone else.

(palpitations was the word you were looking for.)
My name is not really Johnson. MSed up since 1993
User avatar
Johnson
Family Elder
 
Posts: 979
Joined: Tue Dec 01, 2009 4:00 pm
Location: Ucluluet, BC

Postby Brightspot » Fri May 14, 2010 11:04 pm

Costume

Thanks for the wonderful pictures and commentary.

Your contribution to the site is always worth the ride! (And your blog was not a disappointment.)

Am hoping that you will be reporting vast health improvements in your usual enthusiastic and unrestrained manner.

I look forward to your posts for years to come!

Rant on my friend.
User avatar
Brightspot
Family Elder
 
Posts: 207
Joined: Fri Jan 15, 2010 4:00 pm
Location: Vancouver, Canada

Postby costumenastional » Sat May 15, 2010 2:08 am

cheerleader wrote:...amazing pics. Truly incredible. And your words are powerful...I know you're angry, and believe me, I understand 100%. You're right, I can't say all that I think and feel, because I have to be careful--especially working with a new non-for-profit group that will be taking the CCSVI cause forward. But you go ahead and vent!!! As an MS patient who has venous obstruction and malformation, you have every right. I truly hope you receive more and more health and relief from MS symptoms. Keep healing and keep blogging...
cheer


Of course you have to be careful. I cant imagine what would happen if everybody was like me :)
Hope your group will be up and running soon. Many people are waiting for this to happen myself included. And yes, i must say it: i cant imagine this place without your contribution. Do not jeopardise what you have accomplished Cheer. We all know whats going on...

I will keep blogging cause i really think that CCSVI must cease to exist for various reasons and i wont stop till it goes mainstream. We all must help towards this direction anyway we can. The sooner we take vascular problems out of the equasion the better for reasons many of us already know...

I used to be angry indeed. But not any more. Now it s time for me to help people decide to check out their veins. And i am VERY happy to say that i have already helped a few one way or another :)
Sou helped me a great deal in my quest for liberation and i owe him big time. But i believed too. Like he believed. Helping others to believe is our duty. And in our Greek ccsvi facebook page things are going forward.
Last edited by costumenastional on Sat May 15, 2010 4:04 am, edited 4 times in total.
User avatar
costumenastional
Family Elder
 
Posts: 740
Joined: Sat Jan 31, 2009 4:00 pm
Location: Greece

Postby costumenastional » Sat May 15, 2010 2:17 am

vivavie wrote:I feel better but not fantastic. (pain and energy are same as before)

I won only half of my battle. Wish I could find a specialist to look at my MRV without another trip to Europe and a lot of money...

When in Poland the only comment from the MRV doctor was : "it is very similar to what we see in MS people". OUF! I was glad I could have the procedure done the next day and did not ask more questions.

I feel for you!


And i feel for you! But dont worry. Please, make sure that your jugular veins remain functional.I am so sorry about your azy though.... Fight for someone to follow up on you. I know i wont take no for an answer in my country. I have a definite diagnosis and noone will stop me from keepin the blood on the right track you know? On the other hand, Bulgarians are very cool not to want a revisit so i ll see.

Just a hint: i dont think miracles will happen. At least not right away. I really think you and me did the best possible thing for us. We must keep the faith and we must keep it real. All i need is for subtle improvements to come so i ll know this is working. And guess what: i think they are coming.
Last edited by costumenastional on Sat May 15, 2010 3:39 am, edited 1 time in total.
User avatar
costumenastional
Family Elder
 
Posts: 740
Joined: Sat Jan 31, 2009 4:00 pm
Location: Greece

Postby costumenastional » Sat May 15, 2010 2:21 am

Johnson wrote:(palpitations was the word you were looking for.)


ah yes :) thanks man!
User avatar
costumenastional
Family Elder
 
Posts: 740
Joined: Sat Jan 31, 2009 4:00 pm
Location: Greece

Postby pmouse » Sat May 15, 2010 8:45 am

costumenastional

How can I give you some of my pics? Check yout PM.
User avatar
pmouse
Family Member
 
Posts: 26
Joined: Mon Feb 01, 2010 4:00 pm

Postby Trish317 » Sat May 15, 2010 9:26 am

costumenastional wrote:
cheerleader wrote:...amazing pics. Truly incredible. And your words are powerful...I know you're angry, and believe me, I understand 100%. You're right, I can't say all that I think and feel, because I have to be careful--especially working with a new non-for-profit group that will be taking the CCSVI cause forward. But you go ahead and vent!!! As an MS patient who has venous obstruction and malformation, you have every right. I truly hope you receive more and more health and relief from MS symptoms. Keep healing and keep blogging...
cheer


Of course you have to be careful. I cant imagine what would happen if everybody was like me :)
Hope your group will be up and running soon. Many people are waiting for this to happen myself included. And yes, i must say it: i cant imagine this place without your contribution. Do not jeopardise what you have accomplished Cheer. We all know whats going on...

I will keep blogging cause i really think that CCSVI must cease to exist for various reasons and i wont stop till it goes mainstream. We all must help towards this direction anyway we can. The sooner we take vascular problems out of the equasion the better for reasons many of us already know...

I used to be angry indeed. But not any more. Now it s time for me to help people decide to check out their veins. And i am VERY happy to say that i have already helped a few one way or another :)
Sou helped me a great deal in my quest for liberation and i owe him big time. But i believed too. Like he believed. Helping others to believe is our duty. And in our Greek ccsvi facebook page things are going forward.


I'm inspired by you both, Costume and Cheer, and by everyone who is a pioneer in CCSVI. Because of you and, of course, all the doctors involved, my darling man has hope where nothing but resignation existed before. I'm so thankful for everyone who is leading the way.

Forgive me because, at the moment, my focus is finding the place for him to be correctly tested and treated. Right now, I can't see the forest for the trees. But, I know that in the future we will be in a position to help many more people.

Thank you, again, to everyone who are helping us.
User avatar
Trish317
Family Elder
 
Posts: 357
Joined: Sat Sep 06, 2008 3:00 pm
Location: Rhode Island

Postby Johnson » Sat May 15, 2010 3:42 pm

Trish317 wrote:...
Forgive me because, at the moment, my focus is finding the place for him to be correctly tested and treated. Right now, I can't see the forest for the trees. But, I know that in the future we will be in a position to help many more people.

Thank you, again, to everyone who are helping us.


Check out Dr. Sinan of Kuwait (search this forum for links). I do not think he is as booked as others. I understand that he and Doc. Sclafani communicate, so that is a great reference, in my mind.

Best of luck.
My name is not really Johnson. MSed up since 1993
User avatar
Johnson
Family Elder
 
Posts: 979
Joined: Tue Dec 01, 2009 4:00 pm
Location: Ucluluet, BC

Postby Trish317 » Sat May 15, 2010 8:57 pm

Johnson wrote:
Trish317 wrote:...
Forgive me because, at the moment, my focus is finding the place for him to be correctly tested and treated. Right now, I can't see the forest for the trees. But, I know that in the future we will be in a position to help many more people.

Thank you, again, to everyone who are helping us.


Check out Dr. Sinan of Kuwait (search this forum for links). I do not think he is as booked as others. I understand that he and Doc. Sclafani communicate, so that is a great reference, in my mind.

Best of luck.


Thank you, Johnson!
User avatar
Trish317
Family Elder
 
Posts: 357
Joined: Sat Sep 06, 2008 3:00 pm
Location: Rhode Island

Postby costumenastional » Sun May 16, 2010 5:03 am

Pmouse, check your messages. I sent you my email so you can send me your pics.
Take care friend. Miss you...

I ve been checking my cds one more time. In the pictures i have posted i forgot to mention that the blood under the eye where optic neuritis hit me wont go down immediately like it does in the other vein. Actually a friend of mine saw it just now... It's high up in the jugular very near to my eye's height.
It s frightening. You can see that it takes a few seconds for the dye to go down. Actually it looks static!!! I suspect the same goes for the blood 24/7. The reflux in the jugular IS responsible. In the other side the liquid vanishes.I wish i could upload the actual video. It is so obvious that i am now fully convinced that this is VERY important for people. Zamboni is 100% right. Some of our problems (if not all) are caused by simple plumming issues. And sadly, many of them are here to stay...

I only wish that everyone check their veins asap.

And i wonder how the hell it took me 33 years to go blind if my vein malformations are congenital. It s a miracle if you ask me for someone to be able to have a normal life with problems like this.
I am in shock.

FIX YOUR VEINS. DO NOT WAIT.
THERE IS NO DRUG IN THE WHOLE WORLD THAT CAN FIX WHAT I AM SEING HERE.
Last edited by costumenastional on Sun May 16, 2010 6:19 am, edited 2 times in total.
User avatar
costumenastional
Family Elder
 
Posts: 740
Joined: Sat Jan 31, 2009 4:00 pm
Location: Greece

Postby costumenastional » Sun May 16, 2010 5:09 am

Trish317 wrote:

Forgive me because, at the moment, my focus is finding the place for him to be correctly tested and treated. Right now, I can't see the forest for the trees. But, I know that in the future we will be in a position to help many more people.

Thank you, again, to everyone who are helping us.


Trish, there is nothing to forgive friend. Do what you have to do first and then come back here to help. I wish you and your husband best of luck. Just remember that there are no miracles. It will take time for any healing to happen. For now, see it as your best bet for stopping progression of this roten disease.

Keep it real.
Last edited by costumenastional on Sun May 16, 2010 11:44 pm, edited 1 time in total.
User avatar
costumenastional
Family Elder
 
Posts: 740
Joined: Sat Jan 31, 2009 4:00 pm
Location: Greece

Postby Trish317 » Sun May 16, 2010 8:09 am

costumenastional wrote:
Trish317 wrote:

Forgive me because, at the moment, my focus is finding the place for him to be correctly tested and treated. Right now, I can't see the forest for the trees. But, I know that in the future we will be in a position to help many more people.

Thank you, again, to everyone who are helping us.


Trish, there is nothing to forgive friend. Do what you have to do first and then come back here to help. I wish you and your husband best of luck. Just remember that there are no miracles. It will take time for any healing to happen. For now, see it as your best bet for stopping progression of this rutten disease.

Keep it real.


Thank you, Costume. He's not my husband.....yet. lol! Stopping progression of this horrible disease would be a miracle to us. He finally has hope and I have strong faith, so we have a powerful combination.
User avatar
Trish317
Family Elder
 
Posts: 357
Joined: Sat Sep 06, 2008 3:00 pm
Location: Rhode Island

Postby costumenastional » Sun May 16, 2010 8:30 am

Yes, there IS hope Trish. I know all these sound too good to be true. But i think all of us must take things in our hands in this case. There are doctors wiling to help.Go for it.

There is ABSOLUTELY nothing for you to loose except from a few thousand dollars. Remember to keep your feet on the ground and maybe, just maybe very good things will happen. Will liberation stop MS for ever? I dont know. But if one has CCSVI, liberation is the way to go. Can you imagine if it works for your man?

Try not to pay a million in your quest for liberation. It is not such a serious operation. Let alone the fact that it may have to be repeated.

I admire people like you. I ve said it before. Stand by your man soon to be your husband. Together, you ll win this fight one way or another.

On the other hand, i feel sorry for others, who are talking theirselves to death, waiting for trials and shit like that while their venous system is destroying them more and more as days go by. Make no mistake THEY will be those who will be begging for miracles after they get liberated eventually...

Best of luck to both of you. Keep the faith.
User avatar
costumenastional
Family Elder
 
Posts: 740
Joined: Sat Jan 31, 2009 4:00 pm
Location: Greece

Previous

Return to Chronic Cerebrospinal Venous Insufficiency (CCSVI)

 


  • Related topics
    Replies
    Views
    Last post

Who is online

Users browsing this forum: No registered users


Contact us | Terms of Service