Has anyone decided to "reschedule"?

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

Has anyone decided to "reschedule"?

Postby greenandchic » Thu May 06, 2010 6:39 pm

I am scheduled to go to Poland in December (still haven't received an exact date and all the details yet), and I am having a lot of fear as I am getting closer to December. My fear is 100% financial. I have been on state disability for a year (just ran out) and now on SSI and dont have a clue where I will come up with that kind of money out of pocket.

I am thinking of writing and putting it off for another year in hopes that I will be able to muster up the strength to look for a job and work my butt off to be able to afford it. For the time being, I can only save what I can despite paying for health insurance, high deductibles, etc out of pocket. I can hardly keep my eyes open at times during the day as it is, let alone be able to work full-time though I am enrolling in the Social Security "Ticket to Work Program" regardless.

But my question is, has anyone decided to put it off? I know it sounds horrible when it comes to your health, but it is what it is.
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Postby Billmeik » Thu May 06, 2010 7:51 pm

just rescheduled for a wedding I have to go to. Didnt cancel for the kids dance recital.
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Postby SandyK » Fri May 07, 2010 3:41 pm

greenandchic-I had a June 14th date and I had to cancel because of airfare rates. I should still have my original time of January still available and airfare is cheaper at that time. It was an awful decision that I had to make but I just didn't have the money to fly two people to Poland. I only had enough to go by myself and I couldn't see myself that far away from home alone and in a wheelchair.
Diagnosed 1994, Self EDSS is 6.5
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Postby 81Charger » Sat May 08, 2010 7:45 am

I had a June 8th or 8th date that I postponed. I live here in eastern Canada & would like to know if this is what I have wrong with me or not. I can't afford to spend that much money to go over there & find out my veins are fine. If some facility starts testing down this way that does the correct protocol I'd like to do that.
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from May 24 to September

Postby mohzi » Sat May 08, 2010 10:06 am

I am in the middle of trying to reschedule from May 24th and 25th to sometime in September.
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Postby greenandchic » Sat May 08, 2010 1:21 pm

I'm somewhat glad to know I'm not the only one in this. I too have a fear that I will go all the way over there to find out I am "fine" - in addition to the financial reasons...
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Postby Zeureka » Sat May 08, 2010 2:17 pm

Greenandchic, I also re-scheduled.

Had a March date and switched with s.o. on TIMS with end May. Apart from financial problems to get the money by that date my father got seriously ill and so went 10 days to visit him in hospital in Germany, which unfortunately then even turned out to be his last weeks/days...

I posted on TIMS that had cancelled due to problems + that had been told would be put on end of waiting list. Was very sad about the circumstances.

And then got very nice reactions :idea: : people contacted me via private msg to switch with me. First one that contacted me was for end May and we managed to switch by getting confirmation from Marta within 24h, it was amazing :D ! You can maybe try this way to switch date with s.o. and as long as you inform/ask Euromedic (e-mail to Marta) a few months before they seem to be flexible to do the switch. For them it does not change anything and can imagine they are even happy that we organise it inbetween us (less work for them...)

But in relation to your question: decided to put it off?...no...only postponed. So you could of course postpone for another year by trying to switch with s.o. if required for financial reasons (sorry for this, it is sad this issue...) and/or if you prefer to first monitor further developments...but better leave your doors open! By postponing instead of cancelling you have nothing to loose...and a lot to potentially win!
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Postby Johnson » Sat May 08, 2010 3:16 pm

81Charger wrote:I had a June 8th or 8th date that I postponed. I live here in eastern Canada & would like to know if this is what I have wrong with me or not. I can't afford to spend that much money to go over there & find out my veins are fine. If some facility starts testing down this way that does the correct protocol I'd like to do that.


I think that if you have "MS", you can be pretty darned certain that you have CCSVI.

To do a cost/benefit analysis - I paid $2350 for Doppler and MRV at False Creek. I was 90% certain that I had CCSVI, and did not need the scans to decide to go to Poland. I only did them at FC because it led to a referral with the IR that got shut down in Victoria before he could "do me". I figured that the $2350 would be worth it if it saved me $15,000, or whatever, to go to Poland. The $2350 would have paid for cattle class airfare and 5 nights at the Qubus, or airfare and the Doppler.

Unless you think that you can get treatment here in Canada with your results (highly unlikely at this point in time), I would advise putting the money to a flight to Poland.

I do feel though, that we will see treatments being done openly here by Christmas. They will probably be announcing it as I am wheeled into the theatre in Katowice, with my good luck. Grin The Internet has changed the face of the game, and our numbers are huge. This is being discussed in both chambers of Parliament, it fills the airwaves and newspapers - front page. The ramparts are crumbling under our hammering.

I am sorry for the people who are limited by lack of finances. Get inventive. Fill out some applications for credit cards (LIE!) and max them out. Then declare bankruptcy. It's not like most of us have anything to lose. Plus, you will feel better, and maybe even be able to work again! Then you can pay them back. Have a raffle where you sell future services - like house painting, piano lessons, tutoring math, whatever. People pay up front, and get something back later, when you are feeling better. IPOs for Liberators LLC. People should be investing in people, in my humble opinion.
My name is not really Johnson. MSed up since 1993
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Postby BalsaBoy » Sat May 08, 2010 3:35 pm

sell future services - like house painting, piano lessons, tutoring math, whatever.


Wow. Will I be able to do all those things after liberation?
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Postby Johnson » Sat May 08, 2010 4:40 pm

BalsaBoy wrote:
sell future services - like house painting, piano lessons, tutoring math, whatever.


Wow. Will I be able to do all those things after liberation?

! sure hope so! I'm a natural optimist, though. I get through the winter by knowing Spring will come.
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Postby scorpion » Sat May 08, 2010 6:20 pm

I would reschedule after viewing the Buffalo results but that is just me. I don't know what your talking about Johnson, although there is a correlation with CCSVI and MS it is not something to be "certain" about. To tell someone to expect some major change in their life is misleading.
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Postby eric593 » Sat May 08, 2010 6:28 pm

scorpion wrote:I would reschedule after viewing the Buffalo results


How come :?:
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Postby Lyon » Sat May 08, 2010 6:47 pm

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Last edited by Lyon on Mon Nov 21, 2011 4:43 pm, edited 2 times in total.
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Postby Johnson » Sat May 08, 2010 6:51 pm

To tell someone to expect some major change in their life is misleading.

Yes, I know that I am excitable, and do get excited, but I did not suggest that anyone expect major changes. I don't expect them myself, but if I have them... I'll come and paint your house. Kay?
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Postby scorpion » Sat May 08, 2010 7:02 pm

Bob why do you say that it seems certain that everyone with ms has ccsvi. That is not what the results of the Buffalo study seemed to show. A correlation yes but 100% correaltion no.
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