Ernie

Hi, You can take salt pills which are more easy to swallow.

Hi Lolo, I am scheduled for Febuary 10th with Dr Low. I have no schedule and no information in my envelop. The only thing I know was said on the phone. The secretary told me that I was scheduled for a nerve conduction test, sweat test and autonomic reflex screaning. Those 3 tests costs 3,000$. There are only 2 sheets, that's all! Would you mind telling me which hotel you were given and the phone number. If you prefer you can PM me. They also ask me to put 5,000$ up front. It's like we are going to two different places.

Hi Flop, Yes I have copies of most of my tests. That's an excellent idea to have an appointment with different specialists. I will bring my files with me. Thanks

Hi Lois, How much is the Kahler at Mayo price? I checked on the internet and the cheapest I have found is 79$ per night for a room. Do they give a reduction when we mention we are going to Mayo? I am kind of afraid of doing the sweat test because heat triggers my syncopes. I wonder if they are going to realise that I am unconscious in the oven and take me out of there or if they are going to leave me there until the time is done? I am already comfirmed with the diagnosis I want to have a better medical treatment. If the sweat test is just to confirm the diagnosis I don't think it is worth my while doing it but if it can help them give me different meds that are more suited for my needs then I will do it. I believe that when I did my TTT at NIH they measured the sweat and I did the Valsalva. I don't want to pay for a TTT at Mayo as it is 5,000$. Maybe I will ask about the EDS testing because I have joint pain. I would like to have a video endoscopy but it cost 2,400$ so I will wait for that one. It's kind of difficult for me to know what test to ask for because I don't know what is available. It's not as if I am starting from scratch. Thanks for your help.

Hi, On Medical Mysteries last night there was 30 minutes show of a woman with severe EDS. The doctors explained that its like all her joints falling apart. It took more than 10 years to diagnose her. There might be a repeat of this show so it might be interesting to check it out.

Hi, Whenever I have to stop my meds for testing, like the BB I start to shake all over, my HR increases and I have plenty of other symptoms. I just can't wait to start it back.

Hi, Less than 24 hours. I always know very fast if a medication helps me or makes me worst. With midrodine it took 20 minutes and with propanolol it took 30 minutes.

Hi Ramakentesh, I tried to find the tests Dr Julian Stewart does but I only found his curriculum. Would you have any links to suggest? Thanks for your suggestions. If any of you have other suggestions I will welcome them. Hi Morgan, I am sorry you are not accepted at the big centers. I only get accepted with the top notch syncope specialists because I am the worst adrenaline case in the world. The doctors don't even understand why I am still alive because rats die a 20 x the EPI and I have 100x. They can't test humans of course because they are not allowed to kill people! So I am the benchmark for all the other hyperadrernergic cases in the world. I would much rather be healthy than travel to different hospitals to get medical help. I feel I have a great responsibility to help my peers and this is my way to help them, by pushing doctors to the edge of their knowledge and further. As for the fees a Dear Friend is helping me and I am borrowing the other part of the money. I really want to go because my gut feeling tells me that Dr Low will be able to help. I don't know what he will give me but I believe in him. Love to all

Hi, I don't know which test it is but I know that it would be 2 different tests to find out if you are lacking some in your brain or in your blood.

Hi dizzy, That's very interesting you mentioned the Romberg test. Everytime a neurologist makes me do it I faint immediately. I asked many doctors what caused this and even the syncope specialists had an answer. The more you talk about the ataxia the more I am convinced I have it.

Hi, Hyperadrenergic POTS

Hi, I did not know I was diagnosed with CFS until I read my medical file last year. The doctor had never told me.

Hi, I hope the doctors will find something to control your infections.

Hi, I think there is only the sweat test that I did not do if I conclude from everyone's comments. I did not realiase that I did more tests than most of the members. I am going to Mayo to find more about my etiology. Since my family does not want to be a lab rat anymore I have to find other means of improving my health.

Hi, Your worsening might be caused by the ablation. It depends why and what they ablated.

Hi, I had one a year or two prior to my diagnosis. My HR went up to 180 during the day and the doctor said it was normal. Looking back now I know it was abnormal because during the high HR I was sitting in class. So I don't think it is a good diagnostic tool for POTS unless you write down your position, time of day and activities.

Hi, I am on 10 mg every 4 hours with no side effect. Decreases HR and adrenaline surges.

Hi, I did stress test, echocardiogram, sleep studies, many blood tests, colonoscopy, allergy test, blood volume.

Hi, I am getting closer to my visit to Mayo. I would like to know besides the TTT, the catecholamines and the sweat test, do you have any test that I should do at Mayo? I want to pay for tests that are worth my while. Thanks

Hi, That's good news not having MG. I tried different meds for migraines: Topomax, Axert, Epival.

Hi, In a healthy person the HR increases upon standing, then a few seconds after it gets back to normal. The definition for POTS is an increase of 30 bpm within 10 minutes of standing.

Hi, Hyperadrenergic POTS is a disorder of reacting in a life of death situation. So if you are stressed this increases your symptoms. I take Serax for sleep.

Hi, My skin feels hot and it is hot. My husband calls me the furnace. It's due to vasodilation.

Hi, Without meds I shake all the time. At first doctors thought I had Parkinson's. But when I started the BB I stopped shaking. In my case it's caused by extremely high adrenaline level.

Hi, I found a site that give the dates for all the States. Here it is: http://www.milexautocare.com/steering/steer6.htm The only State I am not allowed is Illionois. Michigan and Indiana are OK and Wisconsin and Minnesota accept only non resident plates.