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Ernie
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Hi,

After 8 years of trying to go to Mayo I finally got accepted. The only problem is that my government won't pay for the appointment.

Does any one of you know how I can go to Mayo without insurance or the cash to pay for the appointments and testing.

Any suggestion would be appreciated.

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Hi Ernie,

Have you checked to see if there are any studies going on that you could participate in?? I know that they paid me to participate in 2006 - but I don't think it was for the full amount of travel, hotel, etc. Still, this may help.

Which doctor are you seeing? I went to Dr. Low. I would call the Autonomic Dept. (or whatever department for the issue you are going to be seen about) and see if there are any studies going on, and maybe they can work something out. I had testing done though, a tilt table among other things, but I also got an appt. at the end with Dr. Low to go over results, etc. So you may want to check in with the doctor you are going to and see if it would be worth it for you/if there is anything available and maybe you could participate in a study and then still be seen on an appointment basis with the doctor.

Please let us know what happens. I hope this helps!

Chrissy

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Try contacting local and national charities, local papers and radio stations asking for money towards the trip. Try travel agents for sponsorship towards travel and hotels. Some people are reluctant to share their story but it does help raise awareness. People from the UK with rare conditions often do this to raise funding for treatment in the USA.

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Hi Chrissy,

I checked for studies and they told me that there is none for me. I have an appointment with Dr Low.

Hi Flop,

I think it is worth my while to try the charity organisations and the other people you suggested. I know some people in here do it too and I really really want to go. I have the feeling that Mayo can help me improve further.

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I feel so bad. I got travel covered but could not get the treatment. Most US people who go to Dr. Low have their records sent in advance and then he reviews them and decides if you are a candidate( no better term right now). This is not the case for Ernie, and that makes it more difficult. I feel really bad.Sad. Miriam

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I am going to Mayo in MN in March and received a packet in the mail with a schedule of tests and doctor appts. in it. They mention in the packet that they offer financial assistance for those without insurance or means to pay. I would call them and find out if you would qualify.

I will be seeing Dr. Low and others and am excited about the prospect of getting more answers. Good luck to you...I hope things work out for you to go.

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Hey Ernie,

Great news that you will see Low. Overall, Mayo Rochester is an amazing experience. Everything is highly organized. Facilities are lovely. Everyone is polite. Volunteers are everywhere and eager to help out. We got more information (and compassion) from Low back in 2004 than from anyone. He was able to help us understand the different aspects of Mike's POTS.

I know that you're very experienced in seeing docs, but here's my 2 cents.

A fellow will do the history and Dr. Low will go by this. As no one gets it 100% accurate, when Dr. Low is reviewing that history with you, be mentally prepared to jump in with any corrections/additions.

Be prepared with all of your questions during your wrap up meeting with Dr. Low. While they do a great job at the time, unless something has changed dramatically, follow up is near impossible. About one year after our visit, and after a lengthy delay, we received a very brief answer to our question about trying mestinon.

Mayo is outstanding about giving you copies of your medical records, but to make things easier, be sure to gather everything you need from the visit before you leave Mayo.

Looking forward to reading your report.

And good luck!

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Hi,

After 8 years of trying to go to Mayo I finally got accepted. The only problem is that my government won't pay for the appointment.

Does any one of you know how I can go to Mayo without insurance or the cash to pay for the appointments and testing.

Any suggestion would be appreciated.

If you don't mind me asking what insurance do you have? I go to the mayo clinic, and at first my insurance didn't cover it, but I was able to swithch. unfortunatly had a lot of previous medical expenses, and a loss of income. When we couldn't pay I called the financial office, and they told me to just keep coming to my appointments. I said even though I can't pay? And she said yes. I only had a couple months untill my insurance changed so I just delayed all my appointments, but I do know that they will work with you. See if you have any other options on your insurance to change insurance providers. And call and just talk to someone about maybe some financial assistance. I know they are really great there, but I go to the one in AZ. Good luck.

Suzy

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Hi,

Here it's a social medical insurance hence it's the government that pays. The policy of the government is to save as much money as they can and they only time they pay for US treatment is for cancer and hip replacement.

I have been asking my doctors to send me to Mayo for 8 years and they all refuse saying that Mayo can't do anything for me. The govenment told me that we have good doctors here but never referred to any even if I asked them recommendations.

I have to bring 5,000$ upfront before even meeting anyone.

How much can a week of testing costs?

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Hi,

Here it's a social medical insurance hence it's the government that pays. The policy of the government is to save as much money as they can and they only time they pay for US treatment is for cancer and hip replacement.

I have been asking my doctors to send me to Mayo for 8 years and they all refuse saying that Mayo can't do anything for me. The govenment told me that we have good doctors here but never referred to any even if I asked them recommendations.

I have to bring 5,000$ upfront before even meeting anyone.

How much can a week of testing costs?

I am sorry to hear that. I know my local Drs didn't help me at all, thats why I went there. For me I had a lot of testing, and seen a lot of specialists, and my last bill was around 9000.00. But I would of sold everything I owned to get the help I have gotten there. I sure hope you can find a way to make it happen. Good luck to you.

Suzy

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Hi Suzy,

Thanks for the answer. I thought it was much more money, like 10,000 $ per day.

I might have to drive there. It's a 40 hours round-trip.

Does anybody know if we are allowed studs on the tires. That's what we have here because we have lots of snow and ice on the roads. I wonder if I would have to change tires before leaving. Here we are obliged under law to have winter tires but I don't know the laws in US and some states.

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Hi Suzy,

Thanks for the answer. I thought it was much more money, like 10,000 $ per day.

I might have to drive there. It's a 40 hours round-trip.

Does anybody know if we are allowed studs on the tires. That's what we have here because we have lots of snow and ice on the roads. I wonder if I would have to change tires before leaving. Here we are obliged under law to have winter tires but I don't know the laws in US and some states.

I'm guessing in Minnesota you can have studs (very snowy, northern state). I found this online:

*Minnesota permits residents of other states that allow studded tires to operate in Minnesota under time restrictions and stud length restrictions.

But I couldn't find exact dates...but winter runs through March up north!

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Hi Suzy,

Thanks for the answer. I thought it was much more money, like 10,000 $ per day.

I might have to drive there. It's a 40 hours round-trip.

Does anybody know if we are allowed studs on the tires. That's what we have here because we have lots of snow and ice on the roads. I wonder if I would have to change tires before leaving. Here we are obliged under law to have winter tires but I don't know the laws in US and some states.

You are so welcome. I am glad I was able to share my experience.

Are you coming from canada? I am not sure about the laws, but do know of some people who have "winter tires" but I don't know if that is what you mean. Good luck.

Suzy

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suzy -

studded tires are very different than the common winter tires used by many.

ernie -

regulations on studded tires vary by state. i'm not sure what your route would be but very quickly i was able to find the following:

What are the national developments on studded tires?

Much of the research on studded tires comes from Finland and Sweden where studded tire use is heavy in the winter months. U.S. studies concentrate on states like Alaska, where lightweight studs have been advocated, and Minnesota and Michigan where all studs have been banned since the early 1970?s. These studies all agree on one finding: pavement wear and rutting due to studded tire use is substantial and costly.

Nationwide, 36 states (including the District of Columbia) allow studded tires but restrict their use seasonally, geographically, or through equipment specifications. Six states (Colorado, Kentucky, New Hampshire, New Mexico, Vermont, and Wyoming) allow virtually unrestricted use of studded tires on state roads and highways.

Seven states (Alabama, Florida, Hawaii, Illinois, Louisiana, Mississippi, and Texas) currently prohibit the use of studded tires under any circumstances; however, out of these states only Illinois has significant amount of ice and snow.

it sounds a bit random, but it's actually from a site from washington state. the link is http://www.wsdot.wa.gov/winter/studtire.htm. the only state that looks like it "might" be an issue for you would be illinois, though i'm not sure as i don't know the route you would take. while i'm not sure it seems like other states you would need to consider at least have provisions for temporary use/ travellers.

hope this helps,

:angry: melissa

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Thanks Suzy and Melissa,

I will be coming from Montreal, Quebec, Canada. Here the law obliges us to have winter tires from December 15th to March. But I have winter tires with studs. They are like little nails imbedded in the tire that gives you more grip on ice so that you can drive with almost the same control as on dry road. I have had studs on my winter tires for 20 years because the roads here are icy and slippery. It's very easy to loose control of your car, especially on highways and on stops signs.

Melissa, I will look at the link you gave me. If I can have airplane tickets that are cheap I will fly, otherwise I will take the car.

Today the temperature here is about -20F and at these temperature salt is not efficient to melt ice. We also have something called blue ice. These section on the roads are very very dangerous because you think the road is dry and when you get on that section your car start to slip because it is more slippery than regular ice and it is invisible.

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Ernie,

When we went to Mayo Rochester we considered driving vs flying for the 3 of us. It was only from Chicago, so quite a bit different from your experience, but we drove because....

We were able to take Mike's cat - very noisy for a good part of the trip (meow meow) but a great comfort to him while we were staying at the Residence Inn (which we recommend).

In addition to the kitty, the car enabled us to take all the comfort items for the multi-day stay. Everything is available at Mayo, but brought from home is much cheaper.

Would have had to rent a car anyway as Rochester is over an hour drive from Minneapolis. There's probably some kind of shuttle from the airport, though, and once you're settled inside the Mayo campus with all their tunnels, you do not need a car. Though it can be convenient for running out for forgotten items ;-)

Airplane travel would have been harder for Mike than the car trip, but then again, ours was pretty much a days drive, not 20 hours.

We factored in an extra day and got there a day early. Helped Mike and us to settle in before the Mayo drill. And also no worries about winter storms delaying us.

If you have any other Mayo questions, be more than happy to help.

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