Just Checkin' In!

[Rena705]

Hey all...I have been hearing about more than a few Canadians going to New York, Bulgaria, Poland etc. to have the CCSVI procedure done.  Is there anyone here that has tried it?  My Mother says that she would pay for me to go wherever I wanted to have it done but I don't have any plans on doing that in the near future.

There apparently was a woman on tv here this a.m. that went to Bulgaria to have CCSVI and although it didn't help her much with many of her symptoms, the biggest relief she experienced was the lack of FATIGUE!  She said that her fatigue has disappeared and that to her is a huge step.  She said she doesn't know if this CCSVI is a cure for MS but it was good enough for her because she can stay awake all day and doesn't have to struggle with fatigue any longer (we hope).

So, I am wondering if anyone here has had it done or is planning to have it done?  I have no idea how one would even go about finding someone to perform it!  I personally don't think I would have it done until there are some results that show there are not any adverse effects and until my neurologist can tell me more about it and he feels comfortable with it.  However, the idea of no longer dealing with daily fatigue is VERY enticing! he he

I am going to Newfoundland next month...maybe they are doing it there??? (a joke for people that know Newfoundland  he he)  Anyway, I would be interested to hear if anyone has had it done or is planning to do it in the near future...I know I have been away for a while so this question has probably been asked 100 times but please humor me???  he he

Lots of Hugs,
Rena705

[mokibear]

Hey Girl, I do know of a girl who has PPMS and has had the testing done and she qualifies to have the procedure done but of course they aren't doing it here. They are looking to sending her somewhere to have it done so I'll let you know when I hear something.

I hope you have a great time in Newfoundland. What a great surprise that will be for your friend.

The heat and humidity has been horrendous here too. Last week we got up to 41 with the humidex!! That's around 105F for the ones who don't have Celsius. Keep cool!!

Hugs
Moki

[Rena705]

Thanks for the advice to check out Sho's journal...very educational for sure!

Shell, if I could send the cool air down I would but we are not having terribly cool weather...it gets hot in the afternoon and then we get these huge thunderstorms where we have to close the windows and die of the heat and humidity all evening!  Not made for MS'ers either I don't think!  Hope things are well with you and you are enjoying some of the summer anyway!  I am heading east in August so it should snow!  ha ha ha

Lots of Hugs,
Rena

[sllowe]

Rena-girl,

You'll enjoy reading Sho's journal and journey w/CCSVI. She has also responded to a lot of posts about it on our discussion threads if you want to search it.

Send us east coasters some Canadian cool air, would ya? Desperately needing it!

(((hugs)))
shell

[Rena705]

Hey girl...how are you doing?  I agree that we haven't heard enough on the media period!  All we have heard are the stories of success, no stories of people that it DIDN'T work on...which has to be a few or I am sure it would be done more don't you???  As usual we only hear the feel good news...no..."darn it, and I thought it would work"! stories.  I am going to send an email to a correspondent on CTV news and ask them about it...after all they are supposed to report the good and the bad!

I am going to Newfoundland on August 18th to surprise my best friend of 24 years for her 50th birthday!  Her birthday is on August 20th and they are having a party at a hall for her in Corner Brook!  She has no idea that I am coming so it should be good!  I am going to fly down on the 18th and stay in a hotel until the 21st...then I am hoping to go to Deer Lake with her to see her house which I haven't seen yet!  I am really nervous about going by myself but there is no way around it.  Then on the 24th I am flying from Deer Lake to St. John's to see some of my hubby's family...and there are a lot of them!  There are about 15 adults and at least 20 kids involved so I am going to be busy!  I really hope my health doesn't interfere with this...it will probably be my last trip for a while!  I am flying home on August 29th and I am sure I will be glad to see my own bed!
I am finding the whole "surprise" aspect really difficult because I can't even MENTION it on facebook or someone is bound to spill the beans!  I am so terrible at keeping secrets and I have to keep it for another month!  ha ha

Anyway, I will let you know if I get anywhere talking to CTV...i doubt they will listen but the squeaky wheel gets the grease and you know me well enough that I am not going to be easily denied!  hehe

Hope you are well honey and I will be talking to you soon!

Lots of Hugs,
Rena  

[twopack]

Go to this topic for the links to journal entries from MS forum member shoshin.  She recently updated with a new entry.

http://www.medhelp.org/posts/Multiple-Sclerosis/CCSVI-journal-update/show/1288655

Mary

[Wobbly]

Hi Rena.. I haven't heard of anyone, you would think if so many people were going all over the place to have this done, Why do we not hear feedback from these people.. on TV... newspapers, online??  

I don't get it.. I only wish they could get answer quicker, but it's going to take time I guess.  To find out if it's a temp help or whatever??

nice to see you online..
why are you heading to Newfoundland?

my Grandson is going there with his adopt parents in Aug for two weeks.

take care
wobbly