Ernie

Hi, I just checked on Mapquest and I will be passing through the States of: Michigan, Indiana, Illinois, Wisconsin and Minnesota. Total Estimated Time: 20 hours 19 minutes Total Estimated Distance: 1213.96 miles

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.

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.

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?

Hi, I will be thinking of you and hoping that everything is fine.

Hi, You can add balance exercises because after being bedridden for awhile and in a wheelchair you have balance issues when starting to walk again. For the diabetic or hypoglycemia issue patients car measure their blood sugar before starting exercises and eat if necessary or adjust their insuline level. Exercising decreases insuline level.

Hi, I see my veins but we also see my husband's veins and he does not have this disorder. The difference between us and a healthy person is that our skin turns blue when we stand up.

Hi, I had my PP at 10 an I feel really bad. It means that there is almost no blood circulating, hence no oxygen.

Hi, It's because the generic is much cheaper and most companies only pay generic so the pharmaceutical company is not making enough money on it. They have a patent for some years (maybe 10 or something) to get back the money they put into the research. But then everyone can produce them and since they don't have research investments they can sell it for less. I noticed that the generic often have lactose in it.

Hi,

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.

Hi,

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.

Hi, In 2007 I went in the hospital because I was dehydrated due a a medication. They put me in the same room as a patient who had severe gastro. I got her virus and ended up 3 months in the hospital because of all the doctors errors. They wanted to place me in a nursing home for the rest of my life. I had to fight and tell them that I absolutely wanted to go back home even if I was bedridden and on bedpan.

Hi, Can you wear it over a light piece of cloth?

Hi everyone, Thanks again for your support throughout my journey.

Hi, I have 3 brothers and that have POTS and NCS. I have 6 nephews and 5 have POTS and NCS. In my family sex does not matter whether or not you have the disorder.

Hi, What about starting the BB before the Mestinon? The BB decreases my HR by about 50 bpm when standing and not much when lying down.

Hi, Could you make an arrrangement with a co-worker to meet them in the parking lot and ride back to drop you off in front of the building before they go park their car?

Hi Marcia, Thanks for the information and the link. I just finished reading the information and I think I am going to give it a try on the gluten diet to see what improvement I can get. It's the first time I speak with someone who has similar problems to mine and has celiac. I had one blood test for the celiac disorder which tuned out negative. I had a colonoscopy 3 weeks ago. The doc told me that I don't have Chron's but I did not get the result of the biopsy yet. I will see my GI doc in March to get the result. I also have anemia and many vitamin and electrolytes deficiencies. I believe that my legs feel heavy when the blood pools a lot because I get that feeling when I stand for some time (2-3 minutes) or when I walk. I never have it when I am supine unless I have just fainted. Then it's my whole body that weights a ton. I strongly believe that our body has the capacity to heal. I have seen many miracle stories of people who were suppose to be incurable get better. You are probably deconditioned because it has been so many years that you have been limited in your physical activity. One way to find out is by starting to do some light cardio like walking for a few minutes and then increasing as you can. Going upstairs for POTS and/or NCS is most of the time a challenge or at minimum it triggers symptoms. I remember when I was 19 years old and swimming 2 miles every single day I could barely walk one flight without passing out. People were telling me I was out of shape! Exercise is very important for us but you have to respect your limits and not push yourself because you can fall in a POTS hole. It's a careful dosing. Then when you see that you can increase your walking distance (and slope if you use a treadmill) you will be able to conclude that your problem is caused partly by being deconditioned.

Hi, I got mine because I could not walk far. My doctor signed the papers and it cost 15$. I have to renew every 5 years I think. What upset me also is when I see a car parked with no handicap tag in our spots. Yesterday there was a young man waiting in the car for his girlfriend. He was there in case the police come to give him a ticket so that he can fly away!

Hi Marcia, Welcome aboard. I found your post very interesting to read. I have very similar symptoms to yours and I am presently under GI investigation. I have that sensation where I can't feel my legs or they weight like a ton. I also bump into people when I walk besides them. I keep excusing myself for bumping them but there is nothing I can do other then staying farther away when possible. I find it interesting that in your case some of your symptoms were caused by the celiac. I know some of mine are caused by electrolytes imbalance. The PT helps because you have more leg muscle tone which helps pump your blood up your legs. I have to lie down regularly during the day. I cannot sit on a straight chair for more than 10 minutes (without fainting). I am reclining or lying down most of the day. I was bedridden and homebound for 7 years, so being able to walk again is new for me.

Hi, She can do some exercises in bed. Contracting and relaxing her leg muscles.

Hi, I take anti-inflammatory Naproxen for pain. I also go to the PT once or twice a week. When I was fainting 10x a day I would go to the PT 3 x week. My PT also recommended that I buy a TENS unit which I did last Friday. It does not cure but it helps the body to produce endorphine to decrease pain. I had my herniated disk when the EMT dropped me on the hardword floor directly on my spine. It was extremelly painful and I had to take Dilaudid, a derivative of morphine for a month. I had told the EMT that I was not able to stand and they did not believe me and tried to stand me up. They just dropped me on the floor as I fainted. They tried to catch me with my T-Shirt so I woke with only my bra and a herniated disk.

Hi, I had many injuries when I faint, at least 3 concussions, a herniated disk and many torn ligaments. I have constant pain from some of those injuries. I did not go to the ER when I had the consussions but I went to my PT. It took several visits to get better, almost 2 months each time. I can't tell you when to go to the ER because I am terrified to go myself and somtimes I think that I might die because I don't want to go. So I am not a realiable source of advice on the aspect of your question.